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Understanding and Coping with Wiskott-Aldrich Syndrome (WAS) — Page 28

IMMUNE GLOBUL IN COMMUN I T YIMMUNE GLOBUL IN COMMUN I T Y

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NutritionTherapies forAutoimmune

Diseases

Antibiotics:Avoiding Interactions

Subcutaneous IG Therapy:An Alternative

H1N1 (Swine) Flu:Knowing the Risks

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4 August-September 2009 www.IGLiving.com IG Living!

About IG LivingIG Living is the only magazine dedicated to bringing comprehensive healthcare information, immune globulin information,community and reimbursement news, and resources for successful living directly to immune globulin consumers andtheir healthcare providers.

IG Living, published bimonthly, is a community service provided by FFF Enterprises, 41093 County Center Drive,Temecula, CA 92591, (800) 843-7477 x1143, fax (951) 699-9655.

Subscriptions to IG Living are free, and readers may subscribe at www.IGLiving.com or by calling (800) 843-7477 x1362.

The opinions expressed in IG Living are those of the authors alone and do not represent the opinions, policies or positionsof FFF Enterprises, the Board of Directors, the IG Living Advisory Board or editorial staff. This material is provided forgeneral information only. FFF Enterprises does not give medical advice or engage in the practice of medicine. FFFEnterprises under no circumstances recommends any particular treatment for any individual and in all cases recommendsthat individuals consult with a physician before pursuing any course of treatment.

All manuscripts should be submitted in MS Word, in Arial font. Manuscripts should be between 650 and 1,300 wordsin length, with unjustified margins and without any other formatting. Submission guidelines are available for downloadfrom the Contact Us page on www.IGLiving.com. Email manuscripts to [email protected]. IG Living retains the right toedit submissions. The contents of each submission and their accuracy are the responsibility of the author(s) and must beoriginal work that has not been, nor will be, published elsewhere, without the written permission of IG Living. A copyrightagreement attesting to this and transferring copyright to FFF Enterprises will be required. Acceptance of advertisingfor products and services in IG Living in no way constitutes endorsement by FFF Enterprises. ©2009 FFF Enterprises Inc.

Advertising in IG LivingIG Living Magazine is read by 30,000 subscribers who are patients who depend upon immune globulin products and theirhealthcare providers. For information about advertising in IG Living, download a media kit at www.igliving.com/web_pages/advertising.html. Or, contact our advertising specialist: Trudie Mitschang, (800) 843-7477, ext. 1340, [email protected].

Up Front

5 EditorialBy Ronale Tucker Rhodes, MS

6 ContributorsExperts in this issue

Did You Know?7 Industry News

Research, science, product and insurance updates

10 Legal IssuesTo Disclose or Not to Disclose?That Is the Question!By Jennifer C. Jaff, Esq.

12 Medical NewsDo Immune Disorders Increasethe Risk of H1N1 (Swine) Flu?By Ronale Tucker Rhodes, MS

Lifestyle34 Let’s Talk

By Shirley German Vulpe, EdD

36 Ask KrisBy Kris McFalls

37 ChoicesBy Ever Fecske

38 An Audience of OneBy Cheryl L. Haggard

40 O Captain, My CaptainBy Mark T. Haggard

42 To Disclose or Not to Disclose?By Jennifer Kester

Sources

44 Product DirectoryAn Overview of PumpsBy Nancy Creadon, RN

46 Book CornerNew and useful book titles

47 Resource CenterCommunity foundations, associations,forums and other resources

Features

14 Nutrition Therapies for Autoimmune ConditionsBy Jessica Schulman, PhD, MPH, RD, CLE

20 Antibiotics: Avoiding InteractionsBy Amy Ehlers, BS, PharmD, BCPS

24 Subcutaneous IG Therapy: An AlternativeBy Mark R. Stein, MD

28 Understanding and Coping withWiskott-Aldrich Syndrome (WAS)By Deena Marie Biengardo

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A community service fromFFF Enterprises, Inc.

Advisory Board

Nancy Creadon, RNVice President VaxAmerica

Erika Lawrence, PhDAssociate Professor

Department of PsychologyUniversity of Iowa

Todd Levine, MDDirector, Department of Neurophysiology

Good Samaritan Hospital, Phoenix

Assistant Professor of Clinical NeurologyUniversity of Arizona

Fred ModellCo-founder of the

Jeffrey Modell Foundation

Marc Riedl, MD, MSAssistant Professor

Department of MedicineClinical Immunology and Allergy

UCLA, David Geffen School of Medicine

Publisher Patrick M. SchmidtEditor Ronale Tucker Rhodes, MS

Assistant Editor Cheryl BrooksProofreader Jackie Logue

Creative Director Sheryl PerezArtistic Director Allan BeanGraphic Artists Allan Bean

Ben Drolet

Contributing Writers

Deena Marie BiengardoNancy Creadon, RN

Amy Ehlers, BS, PharmD, BCPSEver Fecske

Cheryl L. HaggardMark T. HaggardJennifer Kester

Jennifer C. Jaff, Esq.Kris McFalls

Jessica Schulman, PhD, MPH, RD, CLEMark R. Stein, MD

Shirley German Vulpe, EdD

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Our mission is to support the IG community through education, communication and advocacy

IN THE JUNE-JULY issue of IG Living, wereported on the latest IVIG bill that was

introduced in the House and Senate this

past April. This is the second year that legis-

lation to fix IVIG access and reimbursement

has been introduced in Congress. Last year,

it failed to pass for a variety of reasons, but

certainly among them is the overwhelming

volume of thousands of bills that Congress

faces each year. With such daunting compe-

tition, it is highly likely that this year’s IVIG

bill will once again fall short of receiving a

positive response from Congress unless it is

given the attention it deserves. How do we

ensure that? By getting involved.

The importance of making our voices heard

was a main theme at this year’s biennial

Immune Deficiency Foundation (IDF) conference,

held June 18-20 in Orlando. IDF has been a

force behind many IVIG-related bills, and

this year, for the first time, joined with 18

other organizations to sponsor the current bill.

The strategic importance of this combined

effort cannot be overstated. Previous federal

legislative attempts, as well as other state

legislative actions, were independently intro-

duced by IDF and other organizations and

lacked the collaborative impact that inspires

positive legislative attention.

While debate about the IVIG bill was due to

begin on July 6th, it is still not too late to show

support for the bill, even at, and especially

at, the individual level. All major patient

organizations sponsoring the current IVIG

bill request patients and their families get

involved. Obviously, appealing to your local

members of Congress is the first step. To access

a locator to find your local Congressional

delegates, go to the IG Living website where

you can also find a sample letter you can

use to encourage them to support the bill

(www.igliving.com/web_pages/action_items.html).

The IDF website also has useful resources: a

zip-code locator to find your local Congressional

delegates, as well as

a letter composed

by IDF, which can

be supplemented with personal information

(www.primaryimmune.org/action_alert.htm).

That letter can either be emailed directly

from the IDF website, or it can be printed

for mailing. If you decide to write your own

letter, be sure to keep it to one page and to

ask your representatives for their support. In

addition to writing your representatives, it is

recommended that you also call and/or visit

them. Be sure to develop a strong message,

practice it and make it personal.

You can make a difference! As Larry LaMotte,

an IDF representative, said at the conference’s

public policy session, members of Congress

are just like you and me. They all have to get

out of bed, they go to work, they have the

same kinds of issues that we all face. There’s

absolutely no reason to be intimidated by their

position. In fact, just the opposite: We should

expect not only that they be interested in the

issues important to us (their constituents),

they should be answerable to us. Remember,

we pay their salaries. So, get involved and

make a difference. Let’s ensure that you and

others in our community have access to

much-needed IG treatments.

We hope you enjoy this issue of IG Living

and the topics we focus on this month,

including nutrition, antibiotic interactions,

subcutaneous infusion and more. As always,

let us know your thoughts about the

content and if you have suggestions for

future articles.

To your health,

Ronale Tucker Rhodes, MS, Editor

Get Involved!



http://www.igliving.com/web_pages/action_items.html

http://www.primaryimmune.org/action_alert.htm


DEENA MARIE BIENGARDOFreelance Writer

Understanding and Coping with Wiskott-Aldrich Syndrome (WAS)“Because WAS affects a very small number of people, ithas received little attention, despite its devastating effects.”

NANCY CREADON, RNVice President, VaxAmerica

An Overview of Pumps“Infusion pumps can be programmed to provide continuousinfusions, intermittent infusions or bolus infusions.”

AMY EHLERS, BS, PHARMD, BCPSDirector of Pharmacy, NuFACTOR Specialty Pharmacy

Antibiotics: Avoiding Interactions“The single, largest group of medications, antibiotics, canhave side effects and interactions that can range from mildand inconvenient, to serious and potentially life-threatening.”

JENNIFER C. JAFF, ESQ.Founder and Executive Director, Advocacy for Patients with Chronic Illness Inc.

To Disclose or Not to Disclose? That Is the Question!“You have no legal obligation whatsoever to tell an employeror prospective employer that you have a chronic illness — ever.”

JENNIFER KESTERFreelance Writer

To Disclose or Not to Disclose“Many wrestle with the decision of when — or whether —to reveal their medical condition to others.”

JESSICA SCHULMAN, PHD, MPH, RD, CLECredentialed Dietitian and Lactation Educator

Nutrition Therapies for Autoimmune Conditions“There is no single anti-inflammatory diet for everyone;a specialized diet that helps one person may be likepoison for the next.”

MARK R. STEIN, MDPrivate Practice, Allergy Associates of the Palm Beaches

Subcutaneous IG Therapy: An Alternative“SCIG allows patients to self administer infusions athome, and may be especially appropriate for peoplewith PID.”

[email protected] (888) 433-3888, ext. 1349

•

•

•

Contributing Experts



7August-September 2009 www.IGLiving.com IG Living!

Research

Study Seeks Chronically Ill Patients for Survey

Research

State IVIG BillIntroduced

Patients

CIDD Family Gets Extreme Makeover

Individuals with chronic illnessesand their caregivers are being asked toparticipate in a study about the obsta-cles they face, interventions that doand do not work, and ways in whichthe research and clinical trials con-ducted by the National Institutes ofHealth (NIH) may be helpful. The studyis being conducted by the Advocacyfor Patients with Chronic Illness Inc.

and the University of Michigan Centerfor Managing Chronic Disease, madepossible by a grant by the NIH.Participants must be at least 18

years old and either have a chronic ill-ness such as Crohn’s disease, ulcera-tive colitis, rheumatoid arthritis,fibromyalgia, multiple sclerosis,immune deficiency or other chronic ill-ness, or be a caregiver to an individual

affected by one of these illnesses. Thestudy is an online survey created withthe help of 12 patients and caregivers.Those unable to take the survey onlinecan be interviewed by phone. A totalof 1,500 individuals is sought for thesurvey. For more information, contactJennifer Jaff and the Advocacy forPatients with Chronic Illness at (860)674-1370.

The Legislative TaskForce on PeripheralNeuropathy convenedin Sacramento inMarch to submit rec-ommendations to theCalifornia Legislatureon public and physi-cian awareness of thedisease, to promoteearly diagnosis and toaddress access to proper treatment.Specifically, the task force recom-mended that the Legislature passlegislation to enact state standards ofcare for IVIG, specifying what isrequired to provide IVIG, as wellas requiring medical institutionsthroughout the state to either stockIVIG or to have direct product accessto obtain IVIG in a short period oftime. In addition, it recommendedthat standards “require insurancecoverage for the screening andtesting procedures necessary todetect peripheral neuropathies,” andthat “insurers cover all brands of IVIGand other treatments that maybe required for the treatment ofperipheral neuropathies.”

Molly and Maggie Cerda arehealthier than they have ever been.The sisters, along with their mother,Terri, have combined immune defi-ciency disease (CIDD), and had beenliving in a house that had mold in thewalls, as well as allergens, structuralproblems and an outdated plumbingsystem. For patients with CIDD, theseconditions can exacerbate their ill-ness, causing coughing episodes andeven a shutdown of the lungs. Now,thanks to ABC’s “Extreme Makeover:Home Edition,” those issues are inthe past. The Cerdas were chosen for

a home makeover because of theirpersonal, financial and health-relateddifficulties resulting from havingCIDD, as well as their volunteerwork for the Immune DeficiencyFoundation (IDF) and for families in

need, both in their local communityand around the country. As part of the makeover, the home

was demolished and rebuilt from theground up in seven days. Hundredsof volunteers from their communityworked on the home, new furniturewas donated, as was three years ofsecurity service, a year of pest controland other donations. The family wasreintroduced to the house on March19. “Our life is going to be differentbecause the air inside this house iscompletely clean,” Molly Cerda said.“That helps my lungs and will makeus even healthier, to the point wherewe might not have to wear masksanymore.” The “Extreme Makeover:Home Edition” aired on May 10 onABC, and the full episode can beviewed at http://abc.go/com/primetime/xtremehome/.IDF is also featured on ABC’s “A

Better Community” website in asso-ciation with the Cerda family episodeto let viewers know how they cansupport IDF and make a difference inthe lives of families who are affectedby CIDD. More information can befound at http://abc.go.com/abettercommunity/.

Did You Know?


http://abc.go/com/primetime/

http://abc.go.com/abetter


Medicine

Eligibility Rules forDiscounts on Some Drugs Eased

Did You Know?

With people struggling to pay forprescriptions, especially in light oftoday’s economy, many drug compa-nies are easing the eligibility rules fordiscounts. In March 2009, Merck increased

the income eligibility of its assistanceplan for its diabetes and asthmadrugs to 400 percent of the povertylevel ($43,320 or less for individuals;$58,280 or less for couples; $88,200or less for a family of four), from itsprevious 200 percent rate. Abbottlaunched a program to help patientspay for its injectable autoimmunedisease drug, which results in manypeople not having to pay more thanabout $5 per month if they haveinsurance coverage.The income rules for the Together

Rx Access discount drug card werechanged to $45,000 a year for asingle person (up from $30,000) andincreased to $105,000 for a family offive (up from $70,000). The free card,which is sponsored by Pfizer andNovartis, benefits legal U.S. residentswithout public or private prescriptioncoverage who don’t qualify forMedicare. Rx Outreach has added more than

100 drugs to the nearly 300 genericsthat it will provide for anyone with aU.S. address and who earns no morethan 300 percent of the federalpoverty level ($32,490 for an individual;$66,150 for a family of four).While these are just a mention of a

few, information on all drug companyassistance programs can be found atwww.rxassist.org or (401) 729-3284.

Eight outof 10 chil-dren withsevere com-

bined immunodeficiency (SCID) havebeen determined to be cured, accordingto a study published in the Jan. 26,2009, issue of the New EnglandJournal of Medicine. The study involveda different, less-common form of SCID(also known as bubble boy disease),which arises in babies with a genetic

defect that leaves them deficient of anenzyme called adenosine deaminase.Gene therapy for this study was per-formed in Italy and Israel, and the 10children are alive now two to eightyears later, with only two still requiringtreatment. In addition, while recentstudies found that gene therapy alsocarried a risk of leukemia, none of thechildren in this study showed signs ofleukemia or other health problemsfrom the therapy.

Individuals and organizations arebeing sought to host a fundraiser forataxia-telangiectasia (A-T). Thefundraiser is a continuation of the A-T CureTour of 2007 during whichultra-runner Tim Borland ran 63marathons in 63 consecutive days,spanning more than 14,000 miles,29 states, one Canadian provinceand 63 communities where A-T chil-dren live. During Borland’s journey,he pushed a mobility jogging strollerthat either carried an A-T child or abanner bearing the name of a child

who died. The goal was to raiseawareness and funds to help find acure for children battling this rare,terminal disease. Two filmmakers fol-lowed Borland every step of the way,documenting his journey and that offamilies coping with the disease. Thedocumentary, titled “FEAT,” can beshown to raise additional fundsthrough ticket sales. To host a screen-ing in your area, contact [email protected]. More informationabout “FEAT” can found atwww.featmovie.com.

Did You Know?In a recent experiment, mirthful laughter had a very positive effect on

diabetes patients; their levels of ‘good’ cholesterol climbed, whileinflammation levels notably decreased.

— Study by Loma Linda University Preventive CareSpecialist and Psychoneuroimmunologist

Lee Berk, DrPH, MPH

Research

Gene Therapy Successful for Curing SCID

Disease

Raise Money with the A-T CureTour

http://www.rxassist.org




http://www.featmovie.com


Disease

Vaccine Causes Infectionin Infants with SCID

Patients

Free Camp for PIDD Families

The rotavirus vaccine, which theCenters for Disease Control andPrevention (CDC) recommends begiven to all infants at 2, 4 and 6months of age, can cause infection ininfants with severe immunodeficiencies.According to Niraj C. Patel, MD, ofBaylor College of Medicine inHouston, two infants receiving thefirst two of three scheduled doses ofthe live, attenuated-virus rotavirusvaccine (RotaTeq) developed infec-tions traced to the product. These arethe first reported cases of infectioncaused by the vaccine.In one case, a girl was hospitalized

for pneumonia and respiratory infectionfrom 2 weeks to 2 months of age.After the second dose of the rotavirusvaccine, she was rehospitalized withdiarrhea, acidosis and failure to thrive.In the other case, a boy developed

diarrhea, dehydration and shock sixdays after the second vaccination.Molecular analyses showed thatthe vaccine caused the infections,said Patel.

Children with primary immune defi-ciencies, especially those with defec-tive T cells, X-linked agammaglobu-linemia, ataxia telangiecstasia, severecombined immune deficiency (SCID)and Wiskott-Aldrich syndrome,should not receive live vaccines, suchas measles, mumps, rotavirus, BCGand chickenpox (varicella) vaccines.1

However, neither of the children whodeveloped infections from therotavirus vaccine had been diagnosedwith SCID until after infection. SCIDoccurs in about one in 500,000 toone million births. And, even thoughmany organizations are advocating toinclude nationwide mandatory new-born screening for SCID, there is cur-rently only one state, Wisconsin, thatdoes. Massachusetts has offeredscreening on a voluntary basis as ofFebruary 2009.

It is estimated to cost $2.3 millionto treat a diagnosed SCID patientafter problems arise, versus $378,000for diagnosing an infant at birthbefore problems arise.2

A free weekendfor kids ages 6 to17 wih a PIDDdiagnosis and theirfamilies is beinghosted by ThePainted Turtle, amember of PaulNewman’s Associ-ation of Hole in theWall Camps in Lake Hughes, Calif.The Fall Family Weekend, which willbe held September 25 through 27,invites families who are living withthe challenges of caring for a PIDDchild to come to camp and participatein a weekend that emphasizes fun,team building and self-discovery.Activities include boating, fishing, ropescourses, horseback riding, swimming,woodshop and arts and crafts.The camp has a full-time medical

staff who are “joined each session byvolunteer medical professionals whogenerously commit their time and tal-ents to help care for these special kids,”says Rosalyn Sayer, camper recruiterand community relations assistant forThe Painted Turtle. However, explainsSayer, while constant awareness isgiven to the medical needs of campers,they have intentionally set out toremove any hint of a medical presence.“When campers visit the medical clinicat camp, [known as] The Well Shell,”explains Sayer, “they will find colorfulwalls, windows overlooking thesparkling lake and a giant domed turtleshell ceiling overhead.”The camp is open to a limited number

of families and entry is on a first- comefirst-serve basis. For more information,visit The Painted Turtle website atwww.thepaintedturtle.org, or contactSayer at [email protected].

1. ImmuneDisease.com. FAQs on Primary Immunodeficiency. Accessed at http://www.immunedisease.com/patients-and-families/about-pi/faqs.2. Spigel, S. Newborn Screening for Primary Immunodeficiency Disease. OLR Research Report. Accessed athttp://www.cga.ct.gov/2008/rpt/2008-R-0564.htm.


http://www.thepaintedturtle.org


http://www.immunedisease.com/patients-and-families/about-pi/faqs

http://www.cga.ct.gov/2008/rpt/2008-R-0564.htm


Did You Know?

When should you tell anemployer or prospectiveemployer that you have an

immune deficiency or autoimmunedisease? The answer is pretty straight-forward, in my view: You have nolegal obligation whatsoever to tell anemployer or prospective employer thatyou have a chronic illness — ever.Prospective employers are notpermitted to ask questions that wouldforce you to disclose this information,and you are not obligated to tell them.There are, however, circumstances

in which disclosure to an employer isnecessary. First, if you are asking forreasonable accommodations underthe Americans with Disabilities Act(ADA), you have to give your employerenough medical information to: 1) establish that you have a disability

and, thus, are covered by the ADA, and2) demonstrate why accommodationsare necessary and what accommoda-tions are needed. For example, if you have an immune

deficiency or other illness, you willhave to first establish that your illnessis a disability under the ADA. Therecan be little, if any, question that animmune deficiency is a disability nowthat the 2008 amendments to theADA have been passed. A disability isdefined as a substantial limitation ona major life activity. The 2008 amend-ments state that bodily functionssuch as the immune system are majorlife activities, and episodic illnessesthat are disabling when active aredisabling when in remission. On theother hand, whether autoimmunediseases constitute a disability willdepend on the nature and extent ofthe illness. If you have a neuropathythat substantially limits your ability towalk, for example, you will meet thetest. In either case, you will have toprove that you have a disability bysubmitting at least a note from yourdoctor and, possibly, confirmingmedical records.Next, if you are seeking accommo-

dations, you will have to provideenough medical information to allowyour employer to engage in an“interactive process” with you tosatisfy the accommodations youneed. Let’s say, for example, that you

need a flexible schedule so that youcan have time during the day toreceive IVIG. Or, perhaps you need tobe seated away from other employeeswith communicable illnesses. At least adoctor’s note and, possibly, supportingmedical records will be needed toestablish your need to be infusedduring work hours, or that your riskof catching infections is greater thanthe norm. Once you submit this notealong with a written request foraccommodation, your employer eitherwill grant the accommodation orengage in an interactive process to seeif you can be accommodated by othermeans. However, once your employeracknowledges that you are disabled,there must be an interactive process;the employer can’t just say no. The second reason to disclose your

immune deficiency in the workplaceis if you are seeking leave under theFamily and Medical Leave Act (FMLA).The FMLA permits an employee totake as much as 12 weeks of unpaidleave per year for treatment of a“serious medical condition.” A “seriousmedical condition” is more easilyshown than a disability under theADA. Under the FMLA, you do nothave to provide medical records; youjust need a “medical certification,”which can be nothing fancier thana doctor’s note. A “serious healthcondition” is defined as an illness,injury, impairment, or physical or

ToDisclose or Not toDisclose? That is theQuestion!By Jennifer C. Jaff, Esq.

While individuals are not legally required to disclose if they have a medical condition, certain information will need to be disclosed if seeking accommodations under the ADA or FMLA leave.


11IG Living! www.IGLiving.com June-July 2009

mental condition that involves a periodof incapacity requiring inpatient treat-ment; continuing treatment by ahealthcare provider of a conditionlasting more than three consecutivedays; or a chronic condition that con-tinues over an extended period oftime, requires repeated visits to ahealthcare provider, and may involveoccasional episodes of incapacity. Anyimmune deficiency or autoimmunedisease should meet this test, andyour doctor will need to specificallystate that is what you have. Once youhave obtained medical documentation,you simply would submit it alongwith a written request for FMLAleave, and your request should begranted. The 12 weeks of leave canbe taken intermittently.

Finally, how much informationabout your disease should you disclose?In my opinion: as little as possible.

You may feel that your employer willbe more sympathetic if you tell themeverything, but this generally is not thecase. Even well-meaning employers

may worry about your reliability ifthey think you’re very ill. Even if youremployer wants to be understanding,that little kernel of doubt may sneak intothe employer-employee relationship. Toavoid that to the extent possible, discloseonly what you need to disclose inorder to obtain accommodations orFMLA leave. Beyond that, your illnessis your own business.

JENNIFER C. JAFF, Esq., is the founderand executive director of Advocacy forPatients with Chronic Illness Inc., and apatient with two serious chronic illnesses.Previously, she was a trial lawyer andlaw professor.

Editor’s Note: For a discussion about the per-sonal reasons to disclose, refer to the story onpage 42.

You may feel that youremployer will be moresympathetic if you

tell them everything, but this generally is not the case.


Did You Know?

Are individuals with immunedisorders more susceptible tocatching the new H1N1 flu?

While this question is likely beingasked by many in the IG community,especially in light of the factthat those with underlyinghealth conditions are experi-encing the most severe reac-tions to this flu, individualswith immune deficienciesand autoimmune diseasesare no more susceptible tothe H1N1 flu than any otherflu. However, those whocatch the virus do have agreater susceptibility forsymptoms to become moresevere. Therefore, it is espe-cially important for this population toprotect themselves from contractingthe flu.

What Is the H1N1 Flu?H1N1 flu is a common respiratory

disease of pigs. H1N1 flu viruses donot normally infect humans, but canbe transmitted when people handle(but not eat) infected pigs; the infectionis now increasingly being passedfrom person to person. This new flu isa mixture of swine viruses and elementsof human and bird flu. It has symptomsvery similar to the seasonal flu, withseverity also ranging from mild tosevere. Symptoms include fever,cough, sore throat, body aches, chills

and fatigue. However, it has beenreported that the H1N1 flu also hascaused diarrhea and vomiting insome people, symptoms that are nottypical of the seasonal flu bug.

Are H1N1 Symptoms More Dangerous?Individuals with immune disorders

(along with the elderly and youngchildren) are at greatest risk for severeillness from the flu. Because theirimmune systems are compromisedand they are more likely to havelung, circulatory or neurologicalimpairments, their ability to fight offthe flu is diminished, and the likelihoodthat their symptoms will develop intosomething more life-threatening isgreater. A good analogy would be tothink of viruses as mice. Mice wouldrather find a hole in the fence thanmake one of their own. People withimmune disorders are more likely to

have the holes that viruses seek out,making them more vulnerable to thehavoc a virus can cause once it hasentered the body. And, because gas-trointestinal tract and sinus infections

are common in IG patients, thosesystems become more vulnerableonce the virus has invaded the body.A patient already more vulnerableneeds to be judicious about medicalfollow-through when any new symp-toms arise.

What Are the Defenses Against H1N1 Flu?Flu viruses are always changing.

Sometimes they change from whenthe annual flu vaccine is recommendedand the beginning of the flu season;they can even change during a fluseason. When flu viruses change,they may no longer closely matchviruses used to make that season’s flu

Do Immune Disorders Increase the Risk of H1N1 (Swine) Flu?By Ronale Tucker Rhodes, MS




vaccine, which can make the vaccineless effective. But even when thishappens, the first defense againstcontracting influenza is the annual fluvaccine, as it can still offer protection.That’s why the Centers for DiseaseControl and Prevention (CDC) recom-mends getting a flu vaccination everyyear, even when there is a less-than-ideal match between the viruses usedto make the vaccine and those causingillness.1 Vaccination is especiallyimportant for people at higher riskfor serious flu-related complicationsand for people who come into closecontact with them.The CDC also recommends the use

of an inactivated (killed) influenzavirus vaccine for patients with aweakened immune system and theirfamily members, rather than the live,attenuated (weakened) influenzavirus (LAIV) vaccine, commonlyknown as FluMist.2 However, it shouldbe noted that the annual seasonal fluvaccine, which is a killed vaccine, maynot work as well for immune disorderpatients as it does for the rest of thepopulation.3

While no vaccine for the H1N1 fluexists yet, this virus is known to be aninfluenza A virus, and the annual fluvaccine contains influenza A proteins.Previous immunity to these proteinsdoesn’t offer total protection, but itmay help protect against the H1N1flu virus. Patients with immunedisorders may also be provided asmall amount of protection againstthe H1N1 flu with the use of immune globulin.3

Reducing exposure to the flu virusis a second defense. If worried aboutcontracting the flu, individuals shouldavoid crowded places such as malls,

pay close attention to personalhygiene, such as hand washing, andkeep abreast of current reports by themedia and governmental agencies. If individuals believe they have

come into contact with the flu virus,two antiviral drugs, Tamiflu andRelenza, can help to prevent it fromdeveloping. More commonly, however,these two drugs are used to treat theflu and are typically useful if takenwithin 48 hours of the onset ofsymptoms.

Is Plasma at Risk of H1N1 Flu?Individuals with immune disorders

should not be concerned that their IGproduct has been tainted by infectedplasma. According to FDA regulations,individuals who are not in goodhealth are not suitable to donateblood, and blood establishmentsmust defer these potential donors. Inaddition, the H1N1 virus is a largelipid-enveloped virus, and validationstudies performed by product manu-facturers have shown that viruses withsimilar characteristics are effectively

inactivated and/or removed by themanufacturing processes.4

ConclusionWhile it is unknown at this point

just how widespread the H1N1 fluwill become, historically, many newstrains of a flu virus have startedrelatively mildly in the spring, only tofizzle out later. On the other hand,other new flu viruses classified aspandemics also started mildly in thespring, and then returned with avengeance in the fall and winterwhen viruses peak. The World Health Organization,

CDC and state agencies are gatheringinformation about the H1N1 flu on adaily basis in an effort to assess howserious it is, minimize the spread ofdisease, and inform and educate thepublic. For now, the best advice forindividuals with immune disorders isto protect themselves against this fluas they would any other.

References1. Questions and Answers about the

Influenza A(H1N2) Virus. Accessed athttp://cdc.gov/flu/about/h1n2qa.htm.

2. Centers for Disease Control andPrevention. Prevention and Control ofInfluenza: Recommendations of theAdvisory Committee on ImmunizationPractices (ACIP), 2007. Morbidity andMortality Weekly ReportRecommendations and Reports, July 13,2007, 56(RR06);1-54.

3. Primary Immunodeficiency Association.Swine Flu — Your Questions Answered.Accessed at http://www.pia.org.uk/documents/PiAQandAonSwineFlu05May09_000.pdf.

4. Primaryimmune.org. 2009 H1N1 Flu Virus:Information about Newly Emerging 2009H1N1 Influenza (Swine Flu) Virus andBlood Safety. Accessed at http://www.primaryimmune.org/admin_content/admin_files/FDA.pdf.

Patients withimmune disorders

may also be provideda small amount ofprotection againstthe H1N1 flu withthe use of immune

globulin.


http://cdc.gov/flu/about/h1n2qa.htm

http://www.pia.org.uk/

http://www


Inflammation is a normal part of ahealthy immune system. When thebody identifies an injury or foreign

material (such as a “bad” bug), it natu-rally releases messengers such ascytokines and eicosanoids that start acampaign to fight and conquer. Theresult is swelling or fever caused bymicroscopic soldiers (e.g., phagocytes,mast cells, eosinophils, basophils, anti-bodies and T-cells) engulfing, neutralizingor killing the foreign invader. While theinflammation can be a nuisance, itusually means the body is successfullysolving a problem, and in a few days,it feels better.

While it is believed that manynutrition therapies will behelpful for those afflictedwith autoimmune disease,separating the wheat from

the chaff will help patients tounderstand what clinically isand isn’t proven to work.

By Jessica Schulman, PhD, MPH, RD, CLE

“Leave your drugs in the chemist’s pot ifyou can heal the patient with food.”

— Hippocrates

Nutrition Therapies for

Autoimmune Conditions



For individuals with autoimmune diseases, this normalresponse is out of balance. The immune system misreadsthe situation, attacking invaders that are not there, orcontinuing to attack long after the invader has beendefeated. In these cases, the body keeps releasing itsweaponry, essentially attacking itself. The irony is a bitter one:The same processes that heal most people damage thebodies of those living with autoimmune and inflammatorydiseases. For some individuals, this scenario is temporarybut, for others, this dysregulation of immune responsesmay flare up regularly or continue over a period of time.It is estimated that about 8 percent of the population

(14.7 million to 23.5 million) isaffected with autoimmune con-ditions, but they are especiallyprevalent among those livingwith immune irregularities.1 Forexample, according to scientistsat the Stanford UniversitySchool of Medicine’s ImmunologyProgram, “Approximately 25percent of subjects with CVID[common variable immunedeficiency] suffer from autoim-mune disease which could bethe result of immune dysregu-lation.”2 These persistent andoften debilitating conditions —including arthritis, celiac disease,ulcerative colitis, Crohn’s dis-ease, spondylarthropathy, thyroditis and others — haveprofound effects on individuals, families and society: Childrenmiss school and social activities, adults miss work and areless productive, medical costs skyrocket and lives are lost. Although there are treatments for many of these diseases,

there are few cures, so individuals and their caregiversoften look to complementary therapies such as nutritionfor relief. The Internet is full of self-appointed nutritionistsdescribing specific foods that they promise will soften painand improve clinical symptoms. For those suffering fromautoimmune conditions, this advice offers hope, but, as isso often the case with promises that sound too good to betrue, many of these effects have not been supported byresearch. In fact, few human studies demonstrate thatautoimmune conditions can be effectively treated through

the consumption of specific foods or their concentratedextracts (also known as nutraceuticals). At the same time,those suffering from these conditions can improve theirquality of life through optimal nutrition. Following is infor-mation that reviews and discriminates between nutritiontherapies that are grounded in science and those that arestill under investigation.

Eating a Balanced Diet to Reduce InflammationThere is no single anti-inflammatory diet for everyone; a

specialized diet that helps one person may be like poisonfor the next. Those who are hypersensitive to certain

foods, such as peanuts, gluten,cow milk protein, etc., know toavoid them. In the absence of aknown food allergy, or a special-ized diet prescribed by a doctor,the best advice is to eat a varieddiet of nutrient-dense foods, asdescribed in the USDA dietaryguidelines (mypyramid.gov/).This may sound obvious, but infact, a varied and balanced dietmay have specific benefits forindividuals with autoimmunedisorders. We are still learningabout food components thatmodulate immune function. Forexample, only recently did welearn that fiber is a source of

prebiotics, which feed “friendly” bacteria in the gut.3

Similarly, it is only in the last few years that research hasproven that fats from meat sources and certain oilscontribute to inflammation, whereas fats from foods suchas fish reduce the signals in our body to attack. Eating abalanced diet ensures that we reap the benefits of what isknown about healthy nutrition, as well as what we haveyet to discover. What does a balanced diet look like? It consists of

brightly colored fruits, vegetables, legumes and potatoes.It also includes whole, fortified and fiber-rich grains suchas brown rice, flaxseed and lentils, as tolerated, as well aslean meats, fish and low-fat dairy. It is important thatfoods are consumed only to meet the energy needs of anindividual and that a healthful weight is maintained.

Few human studies

demonstrate that

autoimmune conditions

can be effectively

treated through the

consumption of

specific foods.



Overweight places extra stress on the body. Excess fat tissue,in particular, can generate certain compounds like hormonesthat may exacerbate autoimmune conditions. On the otherhand, underweight can leave an individual more vulnerableto infections and slow recovery time. Questions regardingweight and individualized diet therapies can be directed tothe American Dietetic Association at www.eatright.orgor (800) 877-1600 and www.rdlink.com.

AntioxidantsThere are hundreds of antioxidants that might affect

inflammation or pain in joint disease, but as yet, littleresearch justifies consuming therapeutic doses of any particularone.4 For example, although researchers have described theprotective effects of green tea and red wine (polyphenoloxidants) in association with cancer and heart disease,limited information about the effects of these compoundson arthritis, inflammatory bowel disease (IBD) and otherautoimmune conditions exists. A recent review of the literatureconcluded: “Until we have a better understanding of which— if any — dietary antioxidants are responsible forantiarthritic effects … a daily intake of a variety of freshvegetables and fruits, with their naturally occurring antioxidants,is a more rational approach to maintaining a healthy immunesystem than supplementation with nutraceuticals.”4

Omega-3 Fish OilOver the last several decades, one of the biggest dietary

changes in Western countries has been the increased con-sumption of linoleic acid (omega-6) through margarinesand cooking oils.5 Omega-6 fatty acids are known to playa role in sensitization and the allergic response, and they contribute to inflammation and immunity. Researchershave suggested that the increased consumption ofomega-6 fatty acids may account for the rise in autoim-mune disease as well.6 To the extent that this is true, thenconsuming acids that work against the action of omega-6fatty acids would have the potential to reduce inflammation.Nonsteroidal anti-inflammatory drugs like aspirin, ibuprofenand naproxen work in a similar way. Omega-3 fatty acids,like those found in fish oils, have received particular atten-tion for their role in counteracting the effects of omega-6fatty acids.6

Dr. Philip Calder, professor of nutritional immunology atthe University of Southamptom in the United Kingdom,and world renowned for his work on how fatty acids

(alpha-linolenic acid that is rich in EPA and DHA) oromega-3s from marine animals impact inflammation andimmunity, says he was cautious about the use of foods ornutraceuticals for treating autoimmune conditions likearthritis and IBD. He warns that there is “real difficulty intranslating studies and experimental models into clinicalefficacy.” With respect to omega-3s in particular, however,he says he was encouraged by research on healthyvolunteers showing “that it is possible to influence aspectsof inflammatory arthritis by administering fish-derivedomega-3s orally.” Most of the clinical trials that Calder describes show

benefits for people living with rheumatoid arthritis (RA).7

According to Calder, “The evidence is robust if you use ahigh enough dose … from 2 to 4 grams.” Evidence for IBDis much weaker than for RA, and Calder points out that,“If you look at other autoimmune conditions, like lupus orpsoriasis, there probably aren’t enough studies to come toa good enough conclusion about omega-3.” How does any of this information apply to those living

with a suppressed immune system? Calder explains that,“This has been a big question which is not fully resolved… and there is not really strong science in humans to giveus a pointer.” However, he suggests that those withimmune dysfunction have little to lose from taking omega-3supplements because, “Unless there is a nutrient deficiency,the effect of anything nutritional is not likely to be pro-found, unlike other pharmaceuticals that can wipe out afunctioning system.” For individuals who think they might benefit from more

omega-3s in their diet, it is first important to note that

http://www.eatright.org

http://www.rdlink.com



fatty acids from fish are significantly more effective thanthose from plants. This is why the most common way ofboosting omega-3 fatty acid consumption is through fishoil capsules. How do consumers know about the safety, purityand quality of fish oil supplements? They don’t, says Calder,because there are so many brands available. Unfortunately,over-the-counter supplements are not adequately tested,and their safety may not be proven. Moreover, there are anumber of reasons for some people to avoid fish oil, such as bleeding disorders or fish allergies. Therefore, safety issues should be reviewed before considering any supplements (www.nlm.nih.gov/medlineplus/druginfo/natural/patient-fishoil.html). In the U.S., the best that con-sumers can do is consult withtheir physicians, find out whichbrands were used in humanclinical trials, and register withcompanies that conduct inde-pendent supplement testing(www.consumerlab.com). Inaddition, individuals shouldalways talk with a qualifiedhealthcare provider beforestarting any complementarytherapy. A balanced diet will further

improve outcomes. Says Calder:“If you lower arachidonic acidby, let’s say, eating a diet that islower in omega-6s, and at thesame time increasing theamount of omega-3s from fish oil, you can probably get abetter effect than just using omega-3 supplements bythemselves.”8 (For more information on arthritis, Calder sug-gests the book Nutrition and Arthritis by Margaret Rayman.)

ProbioticsFor people whose bodies have trouble regulating

responses to invaders, it may sound strange to recom-mend consuming microbes. Yet, in recent years, a numberof researchers have suggested that more “good” bacteriais exactly what is needed. Researchers have proposed that,as the urban environment has become altered (i.e.,through the routine use of antibiotics, institutionalizedhealthcare, separation of people from farming, etc.), peopleare less likely to develop the healthy flora that help them

fend off harmful bugs. This leaves the gut vulnerable toacquiring pathogenic organisms and “superbugs.” Or, asCalder puts it, “The immune system doesn’t have friendlybacteria to play with … so it starts playing with things thatit shouldn’t play with.” The answer to this problem is notto be less clean, but to make sure that people have theopportunity to develop healthy flora and intestinalmucosa. Probiotics are exactly that: therapeutic doses of “friendly”

microbes such as Lactobacillus rhamnosus GG, L. reuteri,bifidobacteria, Saccharomyces boulardii, etc. These bacteriacolonize the gut and modify the gut flora, offering apotential therapy in conditions associated with infections,

gut-barrier dysfunction andautoimmune conditions.9 Thereare many different types ofprobiotics, and research isbeginning to identify which onesare more or less effective fortreating IBD. Some examples ofprobiotic foods include misosoup, some soft cheeses, yogurtproducts like kefir, sauerkrautand many pickles. It is worthnoting that not all probiotics areconsidered safe and effective.For example, fragile patients orthose with impaired T-cellresponse to candida may not dowell with yeast-based probiotics.

Preventing MalnutritionIn autoimmune diseases that target the gut, such as

ulcerative colitis and Crohn’s disease, there is a complexinteraction between genetic and environmental factorssuch as nutrition. (A detailed article on celiac disease isavailable at www.igliving.com/web_files/d-j09_Celiac.pdf.)One of the biggest challenges is to prevent nutrient defi-ciencies, promote growth in children and protect bones,muscles and immune function.10 Physicians should payspecial attention to preventing anemia by monitoring iron,B12 and folic acid status, and protecting bone by ensuringadequate calcium, magnesium and vitamin D intake. Thereis growing evidence to suggest an anti-inflammatory roleand immune system regulator for vitamin D in Crohn’sdisease.11 The role of nutritional therapy in the management

It is important that

foods are consumed

only to meet the

energy needs of an

individual and that

a healthful weight

is maintained.


http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-fishoil.html

http://www.nlm.nih.gov/medlineplus/druginfo/natural/patient-fishoil.html

http://www.consumerlab.com

http://www.igliving.com/web_files/d-j09_Celiac.pdf


of adult Crohn’s disease is not clear, but there is evidence forthe use of an enteral diet among children. Researchersdescribe the potential anti-inflammatory effects of certainenteral diets on the gut mucosa. Consistent with currentliterature, they speculate that this may be related toparticular fatty acids and/or components that alter the gutflora. Still, more bench and clinical research needs to beconducted.

SummaryComplementary nutrition therapies offer much promise

for reducing the severity of certain autoimmune andinflammatory conditions. But, individuals need to be cautiousabout using ingredients that have been concentrated andpurified for therapeutic purposes. More clinical trials needto be conducted before the public can identify the appro-priate dosages and nutritional supplements for the treatmentof autoimmune diseases. At the same time, individualswho claim to feel better after eating or avoiding certainfoods should not be dismissed. As a leading physician and nutrition expert said, when talking about the accidentaldiscovery of a way to keep milk safe for human consumption:“Casual observations, if carefully made, often prove to bemore than incidental in importance!”12

Clinicians who are experienced in using nutrition therapiesmay advise patients on an individual basis. Likewise, patientsusing nutraceuticals, probiotics or specialized diets oughtto seek counsel and supervision from their physician. A

reasonable scenario might be the combined use of nutritionaland medical interventions to improve outcomes and qualityof life. Even if lifestyle and dietary factors are proveneffective in treating certain autoimmune conditions, thesestrategies will not likely be curative. In such cases, diet andsupplements should be used judiciously and not as asubstitute for medical intervention. Patients with severeautoimmune diseases or regulator T-cell dysfunction, forexample, may require stem cell transplant. As Sophoclesreminded us two millennia ago: “A wise doctor does notmutter incantations over a sore that needs the knife.”

References1. National Institutes of Health, The Autoimmune Diseases Coordinating

Committee. Progress in Autoimmune Disease, 2005. Available at:http://www3.niaid.nih.gov/topics/autoimmune/PDF/ADCCFinal.pdf.

2. Yu, GP, Chiang, D, Song, SJ, et al. Regulatory T cell dysfunction in sub-jects with common variable immunodeficiency complicated byautoimmune disease. Clin Immuno, 2009 [Epub ahead of print].

3. Lomax, A, Calder, PC. Prebiotics, immune function, infection andinflammation: A review of the evidence. British J of Nutr, 2008;101:pp.633-658.

4. Pattison, DJ, and Winyard, PG. Dietary antioxidants in inflammatoryarthritis: Do they have any role in etiology or therapy? Nature ClinPrac Rheumatology, 2008; 4:pp.590-596.

5. Shoda, R, Matsueda, K, Yamato, S, and Umeda, N. Epidemiologicanalysis of Crohn disease in Japan: Increased dietary intake of n-6polyunsaturated fatty acids and animal protein relates to theincreased incidence of Crohn disease in Japan. Am J Clin Nutr, 1996;63(5):pp.741-745.

6. Calder, PC. Personal communication. Professor of NutritionalImmunology at the University of Southamptom, UK. March 2009.

7. Calder, PC. N-3 Polyunsaturated fatty acids, inflammation, and inflam-matory diseases. Am J of Clin Nutr, 2006; 83(suppl):pp.1505S-1519S.

8. Adam, O, Beringer, C, Kless, T, et al. Anti-inflammatory effects of a lowarachidonic acid diet and fish oil in patients with rheumatoid arthri-tis. Rheumatol Int, 2003; 23:pp.27-36.

9. Chow, J, and Mazmanian, SK. Getting the bugs out of the immunesystem: Do bacterial microbiota “fix” intestinal T cell responses? CellHost and Microbe, 2009; 5:pp.8-12.

10. O’Sullivan, M, and O’Morain, C. Nutrition in inflammatory bowel dis-ease. Best Practice Research, 2006; 20(3):pp.561-573.

11. O’Sullivan, M. Nutrition and autoimmune disease; nutrition inCrohn’s disease. Proceedings of the Nutrition Society, 2009; pp.1-8.

12. Hansen, AE. Essential fatty acids and infant nutrition. Pediatrics,1958; 21;494-501.

Editor’s Note: This article is intended for general information only.Individuals with medical conditions should consult a physician to deter-mine what eating pattern or supplements are right for them.

JESSICA SCHULMAN, PhD, MPH, RD, CLE, is a credentialeddietitian and lactation educator, holds a doctorate in healthbehavior, and is the author of the book, Nutrition in Sicknessand in Health.


http://www3.niaid.nih.gov/topics/autoimmune/PDF/ADCCFinal.pdf

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the nation's most trusted distributor of plasma products, vaccines

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By Amy Ehlers, BS, PharmD, BCPS


According to the Food and Drug Administration(FDA), there were more than 480,000 adverseevents associated with drugs and therapeutic

biological products reported by consumers, healthcareproviders and drug manufacturers in 2007. Of these, nearlyhalf a million adverse events, or more than 270,000, wereassociated with a serious outcome, such as hospitalizationor death. While this number may appear high, it representsonly a fraction of the nearly 3.5 billion prescriptions thatwere filled in retail pharmacies in 2007. The single, largest group of medications, antibiotics, can

have side effects and interactions that can range frommild and inconvenient, to serious and potentially life-threatening. How can patients avoid becoming one ofthese adverse event statistics?

Use of AntibioticsPatients should avoid taking antibiotics unless

absolutely necessary. This may be much easier said thandone for those with an immune deficiency. However,ensuring that patients do not self treat unless directedby a physician is the most important first step.Antibiotics are effective only against infections causedby bacteria and should not be used for viral illness suchas influenza, colds and non-bacterial sore throats. Following directions is also important. There is a mis-

conception that if a little medicine works, a lot mustbe better. Patients may be tempted to increase thedose or frequency of their medication, because theyare “really sick” compared to last time. But, makingthis decision without consulting a physician can have


serious consequences. It can cause kidney or liver damageor other potentially permanent effects.With each overuse or misuse of antibiotics, the risk of

antibiotic resistance increases. Bacteria are able to quicklymutate in an attempt to survive the hostile environmentcreated by the antibiotic. Over time, the bacteria adapt in

such a way that they becomeharder to kill and have the potential

to cause more serious infections that aremore difficult and costlier to cure. These

antibiotic-resistant bacteria then have the abil-ity to be spread to others.One of these bacteria, Clostridium difficile

(often referred to as C. difficile or C. diff), is also apotential risk with antibiotic use. Clostridium difficilenaturally occurs in the large intestine. With broad-spectrum, high-dose or long-term antibiotic use, especiallyin older adults, the other normal bacteria in the gut dieoff, allowing the C. difficile to overgrow and producetoxins. These toxins cause swelling and irritation of thelarge intestine that manifests as watery diarrhea (at leastthree episodes a day for two consecutive days), fever, lossof appetite, nausea and abdominal pain/tenderness. Inmore severe cases, C. difficile can cause pseudomembranouscolitis, a severe inflammation of the colon with blood andpus in stools, which can cause death. This infection can betreated with oral metronidazole or oral vancomycin.However, like other bacteria, resistant strains of the C. difficilebacteria have been seen, which have caused conventionaltreatments to be less effective.

Antibiotics and Drug InteractionsDrug interactions are a concern with antibiotic use.

There are several categories of drug interactions: drug-drug, drug-food and drug-nutrient. Drug-drug interactions are the most likely to cause more

serious events. Most of these interactions occur due to achange in one of the drug’s levels caused by a change in

metabolism of one the drugs. The greater thechange in drug concentration or the more narrow

the therapeutic window, the more likely orsevere a drug interaction will occur.

A well-documented drug interactionis between oral contraceptives andantibiotics. An increase in theclearance of the oral contraceptiveestrogen can decrease its effective-ness. Patients should discussappropriate alternatives with eithertheir physician or pharmacist.Patients taking the drug warfarin

(Coumadin) should also be aware ofthe potential for a change in their

bleeding duration. Warfarin doses may needto be adjusted while on an antibiotic, and then changedagain once antibiotic therapy is completed.The heart medication digoxin (Lanoxin) can be problematic

when taken with several antibiotics. Digoxin has a narrowline between effectiveness and toxicity, so when takenwith antibiotics such as clarithromycin (Biaxin) orazithromycin (Zithromax), the level of digoxin mayincrease, causing some of its toxic side effects.Antibiotics can have interactions not only with other

drugs, but food as well. It is important to know if there areany restrictions when taking antibiotics in relation tomeals. Most antibiotics can be taken independent ofmeals and snacks, but that is not always the case. Forexample, amoxicillin (Amoxil) is best taken on an emptystomach, which is usually defined as one hour before ortwo hours after a meal. If taken with food, the effectivenessof the antibiotic is reduced and may be the equivalent ofthrowing the dose in the trash. The type of foods eaten with antibiotics may also be of

concern. For instance, grapefruit juice has been shown toaffect the metabolism of a large group of drugs, includingsome antibiotics. Patients who tend to consume largeamounts of whole grapefruit or juice should inform theirphysician and pharmacist.Medications in the tetracycline (doxycycline) and fluoro-


With each overuseor misuse of antibiotics,

the risk of antibiotic resistance increases.



quinolone (ciprofloxacin) classes should not be taken withcalcium-, magnesium-, iron- or zinc-containing foods ordietary supplements one hour before or two hours after. Thedrugs will bind with these elements rendering them ineffec-tive. Calcium, magnesium, zinc and iron can be found infoods and dietary supplements, such as multivitamins, aswell as over-the-counter medications, such as antacids.Herbal medications also have the potential to interact

with antibiotics. St. John’s wort, an herbal product oftenused for depression, can increase the photosensitivity influoroquinolone, tetracycline or sulfa antibiotics. Greentea extracts, when taken with fluoroquinolones, candecrease the clearance of the caffeine and its derivativesfound in the green tea. This may cause an increase of classiccaffeine symptoms such as nervousness, insomnia andheart palpitations. It should be noted that the herbal and natural products

industry is not regulated by the FDA and, therefore, is notheld to the same manufacturing standards and practicesas prescription and over-the-counter medications. This isnot to say that all herbal and natural products are unsafeand should not be used. What this means is that thereview process concerning appropriate doses and dosageforms and the study of side effects and interactions arenot required and, therefore, there is no oversight to ensure

the products are safe and effective. As a precautionarymeasure, patients should read all information containedon a product’s label and packaging, and discuss using theproduct with their physician or pharmacist. Mixing alcohol and antibiotics can have different effects

depending on the drug. Alcohol can cause side effectssuch as drowsiness, stomach upset and dizziness. Whenalcohol is consumed with antibiotics, the same outcomescan occur and the effect can be intensified. When thedrug metronidazole (Flagyl) is taken with alcohol, a severereaction, called a disulfiram reaction, can occur. This reactionwill cause nausea, vomiting, flushing, headache, rapidheart rate and shortness of breath. Patients should beaware that there may be alcohol in over-the-counter coldand cough medications, as well as mouthwash.As a rule of thumb, patients should always protect

themselves when out in the sun. This is especially importantwhen taking fluoroquinolones, tetracycline or sulfa antibiotics,as these types of antibiotics can cause photosensitivity,which can cause sunburns despite the use of sunscreen.

Antibiotics and Drug AllergiesDrug allergies are another common challenge with

medications, but especially with antibiotics. An allergicresponse is defined as a hypersensitive immune reaction to

Antibiotic Class Generic Name (Brand Name) Common Uses

Penicillins Penicillin�V�(Pen�V�K) Skin,�urinary�tract,�dental,�ear�infections

Amoxicillin�(Amoxil)

Amoxicillin/clavulanic�acid�

(Augmentin)

Cephalosporins Cephalexin�(Keflex) Pneumonia,�upper�respiratory,�skin,�ear,

Cefaclor�(Ceclor) dental�infections

Cefuroxime�(Ceftin)

Macrolides Erythromycin�(Ery�tab) Respiratory,�gastrointestinal,�soft�tissue,

Azithromycin�(Zithromax) genital�infections

Clarithromycin�(Biaxin)

Fluoroquinolones Ciprofloxacin�(Cipro) Respiratory,�skin,�urinary�tract�infections

Levofloxaxin�(Levaquin)

Moxifloxacin�(Avelox)

Sulfas Sulfamethoxazole/Trimethoprim� Urinary�tract,�skin,�ear�infections,�chronic

(Bactrim�DS)� bronchitis�exacerbations

Sulfisoxazole�(Gantrisin)

Tetracyclines Tetracycline�(Achromycin) Respiratory�infections,�acne,�Lyme�disease

Doxycline�(Vibramycin)

Minocycline�(Minocin)

Table 1. Antibiotics and Their Common Uses



a substance that normally is harmless or would not causean immune response in most people. There are two maintypes of allergic reactions: IgE mediated and T cell mediated.Reactions that are IgE mediated typically occur within oneto two hours of exposure and may include anaphylaxisand/or anaphylaxis-related symptoms, such as bron-chospasm (difficulty breathing), angioedema (swelling ofthe face, mouth and throat) and urticaria (hives). Thesereactions are serious and potentially life-threatening, andrequire immediate medical attention. T cell mediated reactionsare usually delayed reactionsoccurring anywhere from sixhours to weeks following expo-sure, and they are commonlyexpressed as skin symptoms,such as a rash. These reactionscan be resolved on their own orwith antihistamine or steroidtreatment. If a patient suspects an allergic

reaction to a medication, theyshould contact their physician todetermine the next steps to take,and provide them the opportunityto see the reaction firsthand.Once an allergic reaction is con-firmed, the drug and reactionshould be noted in the patient’smedical record and consistentlynoted when seeing any healthcare provider.It is not uncommon for patients to report allergies to

medications that are actually sensitivities to, or known sideeffects of, the medications. Many side effects of antibioticsare not life-threatening, but they can make life miserable.Patients may report a sensitivity or side effect as an allergybased on their level of tolerance to the specific side effect. For example, diarrhea is fairly common with the oral

antibiotic Augmentin, which is in the penicillin family.Patient A may describe the event as a less-than-pleasantexperience, but tolerable, and will be able to completethe entire course of therapy. If Patient A were to be pre-scribed Augmentin again, they may ask for an alternativeif possible, but would not describe themselves as beingallergic to either Augmentin or penicillin. Patient B maydescribe the same event as the worst experience everand stop taking the medication after the first few days.

If Patient B were prescribed Augmentin again, they willstate that they are allergic to it and can never take itagain. Their physician marks the medical record as allergicto Augmentin.This may never be an issue. But, what happens if Patient

B is hospitalized with a serious staph infection and thetreating physician wants to use nafcillin, a penicillinderivative? If Patient B merely states that they are allergicto penicillin and does not or is unable to disclose that thereaction was diarrhea, the physician will be forced to

pick another class of antibiotics.The alternate choice of antibioticmay require a longer durationof therapy, have an increasedpotential for side effects or bemore expensive than the originalantibiotic preferred by thephysician.

Taking Control of Antibiotic UseThe best advice when it comes

to safely using not only antibiotics,but any medications, is to haveopen, constant and thoroughcommunication with all membersof your healthcare team. Patientsshould keep lists of all prescriptions,over-the-counter, vitamins andherbal products taken regularly,

including the date started, strength, dose and frequencyof administration. This list should be updated regularly andgiven to any provider who is not aware of the changes tohelp avoid problems before they occur. Medicationsshould always be taken as prescribed by the physician, andpatient counseling information provided by the pharmacistshould always be followed. If something is unclear,patients should not be afraid to ask questions or to ask forsomething to be repeated or further clarified. Ultimately,patients are responsible for their own health and well-being and should take an active role in trying to achievethat goal.

AMY EHLERS, BS, PharmD, BCPS, is the director of pharmacyat NuFACTOR Specialty Pharmacy. She has a bachelor’s anddoctorate degree in pharmacy, and is board certified inpharmacotherapy.

It is not uncommonfor patients to

report allergies tomedications that areactually sensitivities

to or known sideeffects of the medications.



Primary immune deficiency (PID) encompasses morethan 150 inherited disorders that impair different com-ponents of the immune system.1 An estimated one in

1,200 individuals in the United States, or approximately250,000 people, have been diagnosed with some form ofPID.2 The disorders are characterized by recurrent or unusualinfections that rarely affect healthy people.3 Antibodydeficiencies are the most common forms of PID2,4 and areusually associated with upper respiratory tract infections,most notably sinusitis and otitis media.2 Treatment optionsfor PID include intravenous or subcutaneous immunoglobulin(IG) replacement therapy, prophylactic treatment withantibiotics and immunizations, and, in some cases, genetherapy or bone marrow transplantation.5

Immunoglobulin replacement therapy is the cornerstoneof treatment for many patients with PID, particularly forthose with antibody deficiencies,5,6 and intravenousimmunoglobulin (IVIG) is the most popular form of IGtherapy in the United States.5,6 However, IVIG oftenrequires administration at an office, infusion clinic or hospital.Most patients experience decreased infections, minimalside effects and have minimal inconvenience with IVIG.Yet, some patients find their IVIG therapy may be associatedwith certain systemic reactions, such as headache, chills,flushing, low back pain, nausea and, in rare instances,thromboembolic events.7,8 Some patients experience afeeling of fatigue or notice an increased incidence ofinfections in the week prior to their IVIG infusion.

The success of four primary immune deficiency patients who switched fromIVIG to SCIG treatment shows that this new form of IG therapy may, in some situations, be a beneficial alternative for some individuals.

By Mark R. Stein, MD



An alternative to IVIG is subcutaneous immunoglobulin(SCIG) therapy.9,10 SCIG allows patients to self-administerinfusions at home, and may be especially appropriate forpeople with PID whose veins are difficult to access, whocannot tolerate the side effects of IVIG, or who prefer theindependence and flexibility of at-home administration.The following case studies describe how four people suc-cessfully switched from IVIG to SCIG therapy.

Case 1Eddie is an 8-year-old boy who was diagnosed at age 1

with X-linked agammaglobulinemia (XLA) and started onmonthly IVIG therapy. However, even with IVIG treat-ments, Eddie continued to suffer from frequent sinus andbronchial infections. Thus, his parents were concernedabout Eddie potentially beingaround sick children at school.Getting treatment for Eddierequired one parent to take offwork once every three weeksfor the eight-hour roundtrip toEddie’s infusion appointment.Eddie’s parents, Amanda andJohn, took turns bringing himfor the infusions, but the timeaway from work was still astrain for them. In addition,the infusion schedule andother appointments stoppedEddie and his brother from participating in certainextracurricular activities they might otherwise haveenjoyed. Further, Eddie was having difficulty maintaining mini-

mally protective serum IG levels above 500 mg/dL. Areview of his medical records revealed that he had expe-rienced one serious bacterial infection and six sinus orbronchial infections in each of the two years since he hadstarted on IVIG. Despite altering his dosing regimen fromevery four weeks to every three weeks and increasing thedose, infections persisted. Eddie’s parents continued toexpress concern with their child’s potential exposure atschool, and their infusion scheduling difficulties contin-ued to cause discontent. Eventually, the family decidedthat home-based therapy for Eddie would be moreappropriate for their busy schedules. Eddie’s immunolo-gist suggested SCIG.

Amanda and John quickly learned SCIG infusion tech-niques and are now very pleased with their ability toadminister Eddie’s IG therapy at home on their own sched-ule. They don’t need to take time off work, and Eddie andhis brother are able to participate in additional extracurric-ular activities. At first, Eddie experienced mild to moderateredness and swelling at the site of subcutaneous infusion,but this has decreased substantially with subsequent infu-sions. His IgG level increased, and his rate of infectionsdecreased with his change of therapy.

Case 2Catherine is a 45-year-old international consultantwith

common variable immunodeficiency (CVID) who hasreceived monthly IVIG therapy for eight years. She

responded well to therapy, buther extensive, unpredictabletravel schedule conflicted withher monthly IVIG infusions.Her infusions generally tookfour to six hours and were tol-erable only when administeredat a slower than normal rate.Further, the headaches andnausea that accompanied theinfusions sometimes forced herto cancel important meetings. Catherine’s physician was con-

cerned about the side effects ofIVIG, and the possibility that her business travel and profes-sional demands would interfere with her monthly infusions.He noted that she had either missed or rescheduled infusions,extending the time between treatments. Ty pically after missedtreatments, she experienced repeated upper respiratory infec-tions. So, at her physician’s recommendation, Catherineswitched to SCIG. She adapted quickly and has been veryhappy with her ability to infuse at home and on business trips.And, she is pleased that she can easily transport her infusiontherapy products on business trips. Catherine has told herfriends that she is less stressed about traveling because hertrips no longer conflict with her IG therapy. She has not expe-rienced systemic adverse events, and while she has experi-enced mild to moderate infusion site reactions, they decreasesubstantially after 24 hours, and have not disrupted her workschedule. With regular home therapy, she noticed a significantreduction in her rate of infections.

SCIG therapy offersan alternate route ofadministration forpatients with poor

venous access.



Case 3Margaret, a 77-year-old woman, was diagnosed with

CVID nine years ago and began receiving monthly IVIGtherapy. She has been pleased with her overall health sincestarting IVIG therapy. However, since she does not drive,she incurred additional cost for transportation to and fromthe infusion clinic. Her IVIG treatments caused frequentheadaches and resulted in pain in both arms due to her“poor” veins, making it difficult for her to take care of herselfat home. Although she received medication prior to infusionsand the infusion rate was slowed, Margaret continued toexperience adverse events. She was unhappy with thelengthy infusion time, side effects and travel costs.Margaret has limited peripheral vascular access after

episodes of inflammation of her veins (phlebitis). Becauseshe is often mildly dehydrated, her veins tend to collapseupon venipuncture. She was recently diagnosed with type2 diabetes, and is now taking an oral antidiabetic drugand following a restricted diet. Because of the adversereactions, Margaret required professional observation duringinfusions. After complaining to her physician about theadverse reactions, the difficulty of accessing a vein forinjection and the duration of IVIG therapy, Margaretlearned about SCIG. Margaret has not experienced any systemic adverse

events with SCIG. She has reported mild itching, rednessand some swelling at the injection site, but these sideeffects decrease substantially within a day after the infu-sion. Margaret no longer requires professional observationof her therapy and is pleased with her ability to self-infuseat home on her own schedule. Because she is no longerdistracted by the side effects she experienced with IVIGtherapy, Margaret has been able to focus on managingher diabetes.

Case 4Daniel is a 32-year-old building tradesman with CVID

who received monthly IVIG therapy for three years. Since hisearly 20s, he has suffered from increased frequent andunusual infections, including pneumonia. While IVIG therapyreduced Daniel’s recurrent bacterial infections, the therapyalso caused consistent side effects, including headaches,chills, fever and severe nausea and diarrhea. His monthlyIVIG therapy required six or more hours to infuse, plus anadditional day of recovery. Because he is a non-uniontradesman, Daniel does not receive paid days off. Thus, hislost wages and the out-of-pocket costs for treatment wereboth a financial burden for his family. Daniel’s immunologist tried to reduce the systemic

adverse events by switching Daniel to an IVIG productwith a low IgA content. However, the reactions persisted.Because of these problems, Daniel decided to try SCIG.Daniel adapted to self administration in one month and

is very satisfied with SCIG. He has not experienced sys-temic adverse events. The injection site reactions are rela-tively mild and almost disappear after one day. Daniel isnow able to maintain a full work schedule.

Vivaglobin SCIG Treatment

Vivaglobin is the first and only 16 percent sub-cutaneous immunoglobulin therapy approvedby the Food and Drug Administration for thetreatment of primary immunodeficiency patientsin the United States. Weekly subcutaneous therapywith Vivaglobin helps provide consistent protectionagainst infections by maintaining consistentblood levels of immunoglobulin.



SummaryAs these cases illustrate, SCIG therapy, which is admin-

istered subcutaneously, offers the convenience of in-homeadministration and may benefit patients who face trans-portation challenges or who have a busy lifestyle. SCIGtherapy carries a lower risk of systemic side effects forsome patients than does IVIG therapy.8,11 Finally, SCIG ther-apy offers an alternate route of administration for patientswith poor venous access, a condition that may be particu-larly problematic for young children and elderly individu-als. The above cases describe patients with ideal profilesfor moving to SCIG therapy. However, it should be notedthat SCIG is not appropriate for all patients, and IVIGremains an effective and well-tolerated alternative formany patients with PID. The choice to infuse intravenous-ly or subcutaneously is personal. There are many factorsthat may lead the patient or physician to favor one or theother, and these factors should be carefully reviewed bythe patient and physician together. At times, a patient willstart one form of therapy and switch to the other basedon side effects or inconvenience.

References1. Bonilla, FA, Bernstein, IL, Khan, DA, et al. American Academy of

Allergy, Asthma and Immunology; American College of Allergy,Asthma and Immunology; Joint Council of Allergy, Asthma andImmunology. Practice parameter for the diagnosis and manage-ment of primary immunodeficiency. Ann Allergy AsthmaImmunol. 2005, 94(Suppl 1):S1-S63.

2. Boyle, JM, Buckley, RH Population prevalence of diagnosed pri-mary immunodeficiency diseases in the United States. J ClinImmunol. 2007, 27:497-502.

3. Slatter, MA, Gennery, AR. Clinical immunology review series: anapproach to the patient with recurrent infections in childhood.Clin Exp Immunol. 2008, 152:389-96.

4. Geha, RS, Notarangelo, LD, Casanova, JL, et al., for theInternational Union of Immunological Societies PrimaryImmunodeficiency Diseases Classification Committee. Primaryimmunodeficiency diseases: an update from the InternationalUnion of Immunological Societies Primary ImmunodeficiencyDiseases Classification Committee. J Allergy Clin Immunol. 2007,120:776-794.

5. Immune Deficiency Foundation. Primary immune deficiency dis-eases in America: 2002. The second national survey of patients.2002. Available at: http://www.primaryimmune.org/publica-tions/surveys/second_national_survey_of_patients_(2002).pdf.Accessed October 6, 2008.

6. Immune Deficiency Foundation. Diagnostic and clinical careguidelines for primary immunodeficiency diseases. 2006.Available at:http://www.primaryimmune.org/publications/book_diag/IDF_Diagnostic_and_Clinical_Care_Guidelines-Final.pdf. Accessed October6, 2008.

7. Roifman, CM, Berger, M, Notarangelo, LD. Management of primary antibody deficiency with replacement therapy: summaryof guidelines. Immunol Allergy Clin North Am. 2008, 28:875-6.

8. Misbah, SA, Chapel, HM. Adverse effects of intravenousimmunoglobulin. Drug Saf. 1993, 9:254-262.

9. Davé, S, Hagan, J. Myocardial infarction during intravenousimmunoglobulin infusion in a 65-year-old man with commonvariable immunodeficiency and subsequent successful repeatedadministration. Ann Allergy Asthma Immunol. 2007, 99:567-570.

10. Vivaglobin [package insert]. Kankakee, IL: CSL Behring LLC,2007.

11. Berger, M. Subcutaneous administration of IgG. ImmunolAllergy Clin North Am. 2008, 28:779-802.

MARK R. STEIN, MD, is in private practice at the AllergyAssociates of the Palm Beaches in North Palm Beach, Fla. He isan investigator of IG products, including the Vivaglobin andPrivigen studies for CSL Behring, and has also investigated IGproducts for Baxter, Octapharma, Grifols, Telecris and others.

Editor’s Note: This article presents successful case studies of SCIG.However, IG Living magazine does not endorse any particular method orproduct. Those decisions should be made by the individual patient inconsult with his/her physician.

Types of PID Described in Case Studies.1,4

The four people discussed in the case studiesin this article are affected by two of the morecommon types of PID. Following are briefdescriptions of each.

Common variable immune deficiency. Thisantibody deficiency typically presents withrecurrent sinopulmonary infections with encap-sulated or atypical bacteria. Laboratory resultsshow a reduction in one or more classes ofimmunoglobulins (e.g., IgA, IgG, IgM) and aninability to produce sufficient antibodies inresponse to pathogen exposure. B cells (thewhite blood cells that play an important role inthe antibody-mediated immune response) mayalso be reduced.

Agammaglobulinemia. This is an antibody defi-ciency that usually presents with recurrent sinopul-monary infections (particularly otitis media, sinusitisand pneumonia) in the first two years of life. Thedefining laboratory features are reduced or absentB cells, resulting in an almost total lack ofimmunoglobulins (antibodies) in the blood.


http://www.primaryimmune.org/publica-tions/surveys/second_national_survey_of_patients_



http://www.primaryimmune.org/publications/book_diag/IDF_Diag


Wiskott-Aldrich syndrome (WAS) is a rare, devastatingdisease that occurs in only four out of every onemillion live male births — which means only

approximately 500 young men in the United States are afflict-ed with the disease. Because it is so rare, there is very littleawareness, and diagnoses and information are hard to comeby. But, with the creation of a new website, WAS patientsnow have a place to turn to for information and support.

Patients with this rare disease andtheir families now have renewed

hope of locating information and a support network to

help them cope and survive.

Understanding and Coping with

Wiskott-Aldrich Syndrome (WAS)By Deena Marie Biengardo



What Is WAS?WAS is an immune deficiency disorder caused when not

enough immunoglobulin is produced by the body. WASpatients suffer from low numbers of blood platelets thatare small and do not function properly. The disorder is asso-ciated with a defective gene on the X (female) chromo-some called the WAS gene. Females tend to be carriers ofthe gene, while males with the gene develop symptoms.

While WAS is generally symptomatic in children, individualsof all ethnic backgrounds in all geographic regions can beaffected by it.

What Are the Symptoms of WAS?Symptoms experienced by WAS patients include recur-

rent serious infections such as pneumonia, meningitis andsepsis; bloody diarrhea; prolonged bleeding; and unusual



bruising. Additionally, patients have a genetic tendency todevelop common allergic diseases such as eczema (itchyred or purple spots) caused by minor hemorrhage, andthey are at significantly higher risk for developing autoim-mune diseases and malignancies, such as lymphoma andleukemia.

How Is WAS Diagnosed?WAS is diagnosed based on a blood film and low

immunoglobulin levels. Often, leukemia is first suspectedbecause of low platelets and serious, recurrent infections.Decreased levels of the WAS protein and confirmation ofa causative mutation provide the most definitive diagnosis.However, there are different levels of mutation that arenot only difficult to diagnose but also complicated totreat. At the time of diagnosis, the patient may not demon-

strate all of the typical WAS symptoms. The disease canpresent itself at varied levels of severity. A milder form ofWAS is XLT (X-linked thrombocytopenia), where thepatient presents mostly with a low platelet count.Another milder form of WAS is XLN (X-linked neutropenia),where the patient presents mostly with a low neutrophilcount. Patients with XLT are often considered ITP(immune thrombocytopenic purpura), which means theyhave a low platelet count for no known cause. According

to Dr. Hans Ochs of Seattle Children's Research Institute,a physician with experience will diagnose a classic caseof WAS within the first few months of life.Inexperienced physicians, on the other hand, often

WAS Treatment and Transplant Centers

Patients with WAS should be able to find assistanceat most large Children's Hospitals. According to Dr.Hans Ochs, the best places to seek treatment arewhere stem cell transplants can be performed.In the West, transplants can be performed inVancouver, B.C., Seattle, Portland, San Franciscoand at the University of California, Los Angeles,and the Children's Hospital in Los Angeles. In themiddle states, transplants can be performed inDenver, Dallas, Houston, Chicago (NorthwesternUniversity), St. Louis, Cincinnati, Minneapolis andNew Orleans. In the East, they can be performedin Boston, New York, Washington, D.C., DukeUniversity in North Carolina, Emory University inAtlanta, Ga., and Birmingham, Ala. In Canada,Sick Children centers in Toronto, Ont., can providehelp to WAS patients.

Sumathi Iyengar, a pediatrician who developed a website for WAS patients and their families, has a son who was diagnosed with WAS at 1 year of age.



make incorrect diagnoses. Therefore, many patients arenot diagnosed as having a mutation of the Wiskott-Aldrich protein for years, and some patients are neverdiagnosed.

How Is WAS Treated?Because WAS is primarily a disorder of the blood-forming

tissues, a hematopoietic (blood-forming) stem cell transplantdone through cord blood or a bone marrow transplantoffers the only hope for a cure. So far, with stem celltransplantation, the life expectancy of a WAS patient isnormal. Transplant is not always recommended, however.Symptomatic treatment can be provided to patients withmilder forms of WAS, and with this, their average lifeexpectancy is 15 to 30 years. Without any treatment, apatient’s life expectancy is very short.Symptomatic treatments for patients suffering from

WAS are limited. Often, children wear a helmet to protectthem in case they fall and bump their heads. This is meantto protect their brain from an injury that could cause ableed. For severely low platelet counts and serious bleeds,patients may require platelet transfusions. A controversialtreatment is splenectomy, or removal of the spleen.Splenectomy can raise platelet counts, but it is reserved forpatients who are not transplant candidates, and it iscurrently not recommended unless the patient is havingserious bleeding problems. Patients who undergo splenectomyhave to be on prophylactic antibiotics every day afterwardto prevent sepsis and other life-threatening infections.Anemic patients may even require iron supplementationor a blood transfusion. Intravenous immunoglobulin(IVIG), given to boost the immune system, is anotheroption for patients with frequent infections.

Information and Support for WASDealing with a diagnosis of WAS is devastating for

families. It is especially perplexing to attempt to navigatethrough the maze of doctors, medications and newterminologies. So, a new website designed to bring theWAS community — patients, doctors and families —together may help to improve understanding, providesupport and spur significant improvements in the careand cure of this disease. Developed by Sumathi Iyengar, a pediatrician whose

son was diagnosed with WAS at 1 year of age, the siteincludes a number of sections. The “find a doctor” featureallows patients to find local doctors who are capable oftreating WAS, as well as other experts in the field.Doctors’ contact information is listed, and links to theirwebsites are provided. A “resources” page has links tomedical literature, immunodeficiency foundations, andfinancial and transplant resources. And, a “how tocope” section provides information for families to betterdeal with the emotional aspects of dealing with thisdisease. Last, a link to a support forum where familiescan connect, exchange experiences and support oneanother is provided.

Raising Awareness of WASBecause WAS affects a very small number of people, it

has received little attention. Raising awareness about WASamong physicians, patients and their families will help to pave the way for early diagnosis, more research in the fieldand more funding.

DEENA MARIE BIENGARDO is a writer who lives in New York

and is currently pursuing a degree in cultural studies.

WAS is diagnosedbased on a blood

film and lowimmunoglobulin

levels.

WAS Resources

To access the Wiskott-Aldrich website, visitsites.google.com/site/athreyi(Note: The WAS site is under construction and willbe accessible in fall 2009.)

To access the WAS support forum, visit www.primaryimmune.org/forum/forum_intro.htm


http://www.primaryimmune.org/forum/forum_intro.htm


Let’s Talk!By Shirley German Vulpe, EdD

If your life depends on immune globulin, this column is for you! Here, we have an opportunity tonetwork and share our experiences about all of the ramifications of our illnesses, and to learn from oneanother. If you have a question, comment or experience to share for a future column, email it to us [email protected].

Joanne Pease is the mother ofthree sons — Curtis, 25, Jeff, 23,and Mitchell, 19 — who have X-linked agammaglobulinemia (XLA).This is a rare immunodeficiency thatoccurs in about one in 250,000males. Females carry the gene buthave no clinical manifestations. Two-thirds of cases are familial. One-thirdare believed to arise from newmutations. Typically, infections beginat about 6 months, after the anti-bodies that infants received fromtheir mothers have been used up.

Shirley | When were your childrendiagnosed, and what role did youplay in that diagnosis? Joanne | My eldest, who was sickmuch of the time as an infant, wasdiagnosed when he was 2 years 3months. At 15 months, he had amumps vaccine and then he con-tracted mumps. After swimming in

the pool in summer, he got pneu-monia. I kept taking him to the doctoragain and again. The doctor wasstumped, so he sent me to Children’sHospital, where he was diagnosed withXLA and started treatment with IG. Jeff was a different story. I was

concerned about him and keptbringing my concerns up to thedoctor, but we were told we wouldnot know if he had the conditionuntil he was 1 year old. After Jeffhad his polio vaccine, he stoppedwalking and standing, and moanedall the time. While I was convincedhe had polio, the doctor told me toget over it, because no one gets thatnow. Since I was convinced therewas something wrong, I took him tothe emergency room at Children’sHospital where a very thoroughdoctor ordered a spinal tap, and Jeffwas diagnosed with polio. He wasimmediately placed in isolation, andpublic health officials were notified.He was in the hospital for six daysand was diagnosed with XLA. Sincethen, he has had 13 correctiveorthopedic surgeries on his rightleg, and he won’t drive because heis not sure he will always be able tobrake as needed. Mitchell, my youngest, was tested

and diagnosed by 7 months.

Shirley | Were there any red flagsthat stand out now?

Joanne | When Curtis was vaccinatedwith the mumps vaccine, he got mumps,which prompted me to ask the doctor,“What is the point of having kidsvaccinated if they still get the mumps?”I was told that “these things happen.”That should have alerted the doctorthat Jeff might also be susceptible tocontracting a disease from a live vaccine.When I brought Jeff in for his vacci-nations, I asked if he could contractany of the diseases for which he wasbeing vaccinated, and they said,“Probably not, but these thingshappen.” Of course, Jeff did get polio.

Shirley | Knowing what you do now,what things would you have donedifferently?Joanne | I would not have had thekids vaccinated with live vaccines.However, the experience was theimpetus for me to testify at theSenate hearing to have live vaccinesdiscontinued. When my childrenwere young, healthcare officialsknew that six to seven children withimmunodeficiencies contractedpolio from the vaccine each year,and at the time, that was consideredacceptable. But, as a result of theSenate hearing, the live polio vaccineis no longer being used.

Shirley | What type of IG do the boysreceive and where? What influencedyou to make those decisions?


35August-September 2009 www.IGLiving.com IG Living! 35August-September 2009 www.IGLiving.com IG Living!

Joanne | Initially, Curtis and Jeffreceived one shot of intramuscularIG every 10 days. When they were6 and 4, respectively, they beganIVIG every three weeks, and theywere included in a treatment trial.They have now participated in severaltreatment trials, and luckily, they tolerateall types of IG well. Now, Curtis infuseshimself subcutaneously with IG, andmy husband infuses the youngerchildren subcutaneously with IG athome every two weeks. The conven-ience, cost savings and general healthof the boys are all better with SCIG.Many factors influenced our decisionsabout treatment; however, the best,most independent treatment possiblefor our boys was always primary inour minds.

Shirley | Have you had any problemsreceiving or paying for the IG? Joanne | We’ve had our adventures,but so far so good. We have partici-pated in many trials that are free. Ourmain concerns have been lifetimehealth insurance caps and makingsure the boys receive their infusionsin the healthiest environment possible.We have been fortunate as our workhas involved changing healthcarecompanies several times and, eachtime, the calculation for the cap isrestarted. I made it my business tolearn as much as possible aboutinsurance and to fight for our rights.While I know that a group plan cannotdeny us insurance, several times, wehave had to request a case managerfrom our health insurance company.It was only after convincing our currenthealth insurance companies that theywould save a great deal of money byletting my husband administer theboys’ infusions at home that we wereable to make that change.

Shirley | Has receiving IG helped theboys? Joanne | The IG has helped immensely,and I can always tell when they aredue for an infusion. They also takeantibiotics prophylactically so they arerarely sick now.

Shirley | Have you received any support? Joanne | My husband and I are ateam, and he is very supportive andcapable. Knowing that I could nevergive the boys needles, I was thankfulthat he felt capable of learning howto do it. I do my part by taking careof the supplies and the record keeping.We are both training our two youngerboys to take over their own care whenthey are older. My husband’s family is very sup-

portive. And, of course, the Internetand the specific associations, such asthe Immune Deficiency Foundationand Jeffrey Modell Foundation, arevery helpful. Initially, I had to rely onwhat the doctors told me; now, awhole new world has opened up.IG Living magazine has also been agreat source.

Shirley | What was the best andworst advice you were ever given? Joanne | The best advice is to beyour child’s advocate. No one knowsyour child like you do, and you canmake a difference! The worst advicewas not to have my third son. I wastold this when I was already pregnant,and I wouldn’t trade him for anything.We hoped he would not be affected,but he is, and we deal with it.

Shirley | Do you have any final messagefor those who read this column? Joanne | Keep records, set an example,explain everything and learn as much

as you can about your children’shealthcare needs, so that you canteach them to be independent.

Editor’s Note: While the polio vaccine is nolonger live, in part because of the Senatehearing at which Joanne testified, it is importantfor readers to know that there still are livevaccines that can pose risks to children withautoimmune disorders who are not yetdiagnosed. Such vaccines include mumps,measles, rubella, chickenpox and rotavirus. Todate, only the state of Wisconsin screensnewborns for immunodeficiencies to alertdoctors to this risk. See the news story aboutrotavirus on page 9 of this issue.

X-linked agammaglobulinemia(XLA) is also known as BrutonAgammaglobulinemia, an inher-ited immunodeficiency diseasecaused by mutations in the genecoding for Bruton tyrosinekinase, a substance critical tothe maturation of pre-B cells.Information can be found athttp://emedicine.medscape.com/article/1050956-overview.

SHIRLEY VULPE has adoctorate degree in educa-

tional administration, a master’s inearly childhood special education, a BScin occupational therapy and a diplomain physical and occupational therapy.She worked for 38 years specializingin setting up rehabilitation and earlychildhood special education programs.Shirley is now retired due to two auto-immune diseases: common variableimmune deficiency and chronic inflam-matory demyelinating polyneuropathy.She has been married for 45 years to aphysician, is the mother of two childrenand the stepmother of five.

Resources


http://emedicine.medscape.com/


Jill: What have you heard aboutthe deleterious effects of eatingsoy foods on those with autoim-mune disorders?

Kris: In my kitchen hangs a sign, “I havea kitchen because it came with thehouse.” For that reason, I asked JillWeisenberger, a registered dietician andnutrition expert, to address your question.

Jill Weisenberger: There is so muchconflicting information on the Internetthat it’s hard to know just what tobelieve. Even when reviewing thescientific literature, it’s hard to cometo strong conclusions. Researchsuggests that infants who are fedsoy-based formula are more likely todevelop autoimmune thyroid diseasethan babies who are fed breast milk.We also know that soy foods mayinterfere with the absorption of syn-thetic thyroid hormone. So, if you take this hormone, wait a few hoursbefore eating soy products, but youneedn’t avoid them altogether. Inaddition, animal research — thatmay or may not apply to humans —suggests both positive and negativeeffects of soy compounds on lupus. Keep in mind that soy is an excel-

lent source of protein and othernutrients. Often, it displaces somenot-so-healthful foods like greasyburgers and meat- and cheese-loaded pizzas. But remember thatsoy supplements and processed soyfoods like soy chips and bars arenot the same as whole soy foods

such as tofu and edamame beans.If you have concerns about soy, it’sprobably wise to avoid processedsoy foods and enjoy whole soyfoods in moderation just like youwould enjoy other whole foods.

Frank: What is the normal immuneglobulin dosage for a male weigh-ing 200 pounds with chronicinflammatory demyelinatingpolyneuropathy (CIDP)? And, howoften should it be given?

Kris: Although all current intravenousimmune globulin (IVIG) products havebeen used to treat CIDP, at this point,only Gamunex has FDA approval forCIDP. To answer your question, Ireferred to the Gamunex packageinsert to find the recommended dosingis an initial loading dose of 2 gramsper kilogram of body weight overtwo to four consecutive days. Afterthe initial treatment, a maintenancedose of either 1 gram per kilogramin one day or .5 gram per kilogramover two consecutive days everythree weeks is recommended.

To calculate your weight in kilograms,divide the number of pounds, inyour case 200, by 2.2 — equalingroughly 90.9 kilograms. Therefore,your loading dose according to thepackage insert would be about181.8 grams, and your maintenancedose would be about 91 grams.Your doctor may also adjust yourdose depending on the vial size ofyour IG medication available at yourclinic or specialty pharmacy. Forinstance, if your medication comesin a 10% solution and vial sizescome in 10 grams and 20 grams,your doctor may elect to give you90 grams of medication as yourmaintenance dose.Of course, with all medical questions,

you should ask your pharmacist anddoctor for specific answers. Dependingon your disease and clinical manifes-tations, your doctor may choose totake a different approach. Taking aproactive role in your care by keepinga health diary, documenting yourresponse to treatment and anyimprovements and declines younotice will help your physician knowhow to best tailor your care.You can find the Gamunex package

insert at www.talecris-pi.info/inserts/Gamunex.pdf.

KRIS MCFALLS has two adultsons with chronic diseasestreated with IG. She is formerly

a physical therapist assistant, and currently,she is IG Living's full-time patient advocate.

Ask KrisBy Kris McFalls

With all medical questions, you should ask your pharmacist

and doctor for specific answers.

Have a question? Kris McFalls, IG Living's patient advocate,is eager to find answers to your questions. Email them [email protected]. Your confidential information will notbe used for any purpose but communicating with you aboutyour questions.


http://www.talecris-pi.info/inserts/


SOME DAYS, IT feels like I pickedthe short straw, when in actuality, Ididn’t pick anything at all; I just gotit. Everyone like me who suffers froma chronic illness knows that we didn’tchoose our diagnosis. But we canchoose how to deal with it. We canchoose to think of our illness aseither a curse or a gift. It’s like theold cliché: The glass can be eitherhalf empty or half full.We have the opportunity to choose

the most positive options that we havefor the life that has been given to us.This choice is not any different fromthe choice a person has to make whendeciding to leave a job or start a newone. It is our choice to deal with ourillness as a different path or a newopportunity. We have the power tolook at life in ways that make us thehappiest we can be. We can chooseto have compassion for ourselves. Wecan choose to love who we were, areand will be. So, if being positive is a choice, why

can this sometimes be the most difficultchoice we have to make? For instance,there are days when I have a wickedsinus headache and all I want to dois sleep. Invariably, it seems there isalways music playing in one room, atelevision on in another, the lawn isbeing mowed and my brother ispracticing the electric guitar. Howcan I deal with all the chaos when Iam feeling so chaotic? I can screamand yell and get irate; that’s certainlythe impulse I feel, and it’s an easyrelease. Or, I can find a positive out-let. I can take some Sudafed and go

for a walk, or take a bath. No onewould argue that this would be abetter choice, but at the time, it isa tough one to make. What choices do we have when

our doctors are not telling us whatwe want to hear? Either they urgeus not to try subcutaneous infusions,or they want us to continue on amedication we really can’t stand,such as prednisone. In these instances,we can make the choice to get angryand frustrated, or we can take adeep, cleansing breath, let it outand think about what would makeus happy. One road to satisfactionand diverting our frustration is tobecome more proactive; we can goto the library, Google, Twitter andreach into the world and do our ownresearch. We can even try to find adoc who will work with us and giveguidance and hope. My point is: We all need to work

on making new choices — ways toexamine our options for happinessand to avoid those dark, negativeplaces that are filled with frustration,

hopelessness and just useless deadends. My new perspective is thatchoices can dictate our destiny. If wechoose to have negative thoughts andlead ourselves into negative places,we will no doubt live a negativeexistence. But if we can make it achoice to think positively, find thegood in every circumstance and actpositively daily, we will absolutely behappier and more productive. Howhard is that choice?Get started right now: Think about

your life, and write down all the posi-tive things you can do to make it better.Be productive, be giving and under-standing, and start making a habitof it. It’s your choice.

EVER FECSKE was diag-nosed with CVID and inter-stitial lung disease in 2004.

She is a fashion design student, lovesspending time with her boyfriend, familyand bulldog, Dunkin, and can’t getenough of writing, cake decorating andanything that sparkles!

ChoicesBy Ever Fecske



WHEN I SPEAK publicly aboutraising three children with a primaryimmune deficiency, I often receivecomments like: “My life isn’t nearlyas bad as I thought it was now thatI know what your family really goesthrough!”

Or: “Now when I’m on my pity pot,I’ll remind myself I could be you.“And my favorite: “Forget antide-

pressants. You’re better than poppin’Prozac!”Backhanded compliments like these

do spur me on; caretaking the chroni-

cally ill is not for sissies. However, I doget weary repeating stories like how Ibacked into a parked hearse at the hos-pital where Caleb was recovering fromsinus surgery. It took my insurance agent30 uncontrollable minutes of laughterto ask me, “Was anybody hurt?”

An Audience of One

By Cheryl L. Haggard



Please, don’t get me wrong. It iswonderful to know that what wego through as a family is not invain, and that some think of us asmodern-day heroes. From time totime, however, I need someone togently unscramble the Dr. Seuss-likemushy-mush feelings I have raisingCalvin, Caleb and Molly. So, like clockwork, I make an appoint-

ment to see Becca, my non-emotionallyattached, once-a-week mental fix. Becca has gently guided me through

the maze of suing our insurance com-pany, and has helped me when thekids’ illness has me freaked out likea cat in a room full of rockin’ chairs.Becca has befriended Molly, joiningher on a justice journey to tacklequestions like, “Am I the only 7-year-old who takes sub-Q?” For son Caleb,Becca has shown him how to recyclea syringe and turn it into a high-cal-iber water pistol. And, Becca has beenmy tour guide on a bumpy, long andsometimes nauseatingly windy roadcalled “Grief.” Grief — as in losingmy body — because a few monthsago, I was diagnosed with ankylosingspondilitis (a degenerative autoimmunedisease of the spine), and just a fewdays from writing this, my dad lost hisbattle with common variable immunedeficiency.Basically, Becca has seen me through

the toughest year of my life, despitemy public platform: Laughter makesgood medicine. And at a recent session,I got a dose of my own prescription.Becca and I had been tossing around

the topic of people being habituallylate to things, specifically my problemwith it. I’ve always explained, “I’mnever late, everybody else is early.”

Becca smiled and said my argumentwas, “Very cute. Narcissistic, but cute.“Of course I had no idea what she

was talking about — this being late —because I was into self-absorbedbabble. I was obviously cluelessbecause I was running fashionably“late” for Becca’s appointment forthe umpteen-millionth time. I pulled into “my” parking spot,

opened the visor mirror, wiped a bitof clear gloss on my lips and thenflicked a poppy seed out from a fronttooth (a leftover from my morning’smuffin).A gentle Idaho rain woke my senses

as it drip-dropped on the sidewalk infront of me. It was a beautiful day,and I was looking forward to sharingwith Becca how well Molly had beencoping with my doing her subcuta-neous infusions. The crisp air matched my fresh

mindset. “It’s going to be a greatsession!” I thought. I grabbed thefront office door handle, but thedoor didn’t open! I shook the handleand tried again to no avail. I cuppedone hand over another and saidthe magic words, “Open you stinkin’stupid door!“ That didn’t help, either.I looked at my purse-sized calendar

just to make sure I was there on theright day. Then a horrific thought crossed my

mind: Did I play my last obnoxiouscard and has my own therapist, myBecca, fired me?The last idea I came up with, other

than breaking and entering, was tocall her cell that she rarely answers.Just leave a message that you triedto meet with her; she’ll understand.I choked back tears as I dialed Becca’s

phone. The familiar brrrriiiiinnnginterrupted my thoughts until, “Hello?”“Becca? Is that you?” I trembled in

shock that she answered her phone.“Yes. Who’s this?” “It’s me, Cheryl. Where are you?”“I’m in my office. Where are you?”

she asked with caution.“Outside, at the front door of the

office,” I answered anxiously, bracingfor impact.As she rounded the corner, she

exchanged her phone for a set ofkeys to unlock the door. She greetedme with her familiar, friendly smile,and her comforting countenancebrought relief to my self-tortured soul.We laughed and celebrated my

overactive brain cells conjuring up astory as silly as my therapist firing me,although it has happened before. “Are you kidding? I’d never fire you!

You are the kind of client that keeps atherapist sane!” Becca announced,interrupting our “Kumbaya” moment.Whodathunkit! Becca and the

audiences before her that know ourfamily’s silly shenanigans were alreadyreaping the benefits of laughter! Itwas finally time for me to take a littlebit of my own medicine. So, if you see me with a goofy

grin on my face, don’t worry! I’mjust yukking it up with an audienceof one.

CHERYL HAGGARD is astay-at-home mom and hasthree children, two of whom

have CVID. She and her husband, Mark,also operate Under the Hood Ministries atwww.underthehoodministries.org.


http://www.underthehoodministries.org


“LET’S GO, GUYS!” I yelled upthe stairs as two of my three kidsdescended from their rooms.“Where is Caleb?” I asked, uneasyabout getting everyone ready for thetrip we had on our schedule.“Caleb Airlines,” I heard from over-

head. “Flight 427, you have finalclearance to land on runway 4-0-9er.”“Ladies and gentlemen, please

return your seat backs and tray tablesto their upright position.”

Then, he emerged. He wore darkblue dress pants above black “spit-shine” shoes, a dark blue jacket thatdidn’t match the pants and a graybutton-down shirt with red stripesthat didn’t match anything. He toppedoff the ensemble with his white pilot’shat. At one time, the hat was anheirloom, traded to my parents by apilot of the Soviet Air Force duringtheir trip to Russia in 1992. It wasbeautiful, brilliant white all around,

flat and round on top, angling downto the back, a black bill at the frontwith the bright red hammer-and-sicklefront and center.I had kept the hat stored in my

garage, waiting for the time when Icould sell it on eBay for four figures.That was until I saw my then-4-year-old son wearing it while riding hisbicycle, a Boeing 737, he said, flyingbetween Boise and Seattle. When itfell from his head a few times, I saw

O Captain, My Captain

By Mark T. Haggard



my four figures headed down thegutter. Now the hat is Caleb’s, and hemakes better use of it than I ever did.As our flight to California was

leaving in two hours, I didn’t havetime to make my son change hisclothes, drive to the airport, getthrough airport security and get toour gate, so we left, my son with hishat and flight plan in hand, and asmile on his face.Adding to the frustration of having

my kids with me was that my wifewas already in Los Angeles expectingme to arrive with them, well-fed andwell-groomed. I had four hours anda stop in Salt Lake City to prepare forthe scolding I would receive upon ourarrival at LAX.During the first leg of our flight,

I was sitting in 19E looking past myson’s hat and out of the postage-stamp-sized window at the brownsand yellows of the passing inter-mountain landscape. I finagled thelast cube of ice out of the bottomof my plastic cup and crunched itinto oblivion, realizing that my nextdrink was 30 minutes away.Just then, a smiling flight attendant

stopped in the aisle next to our rowand stared at my son sitting next tome. “Does the captain want moreCoke?” she asked kindly.I furrowed my eyebrows as the hat

in 19F bobbed up and down.“More Coke?” I asked my son,

watching the flight attendant pouranother plastic cup of the dark drink.“How do you rate?”“He’s the captain,” the flight atten-

dant replied. “You’re just anotherpassenger,” she added, looking atme and piling on insult to my injury.Caleb took his additional drink,

smiled at me, and gulped down morerefreshment.Getting off of the plane in Salt Lake,

we were greeted by a ramp workerstaring at the hat on my son’s head.“You wear hat from my home country,”he said in heavily accented, brokenEnglish.“Really?” I replied, hearing the Slavic

in his voice.

“Da!” he announced. He lookedat my son and said, “You are Captainof Russian Air Force,” and snapped anopen-palmed, Eastern European-stylesalute. Caleb smiled broadly. TheRussian shook my son’s hand andsmiled back just as wide.Later, it struck me that we parents

spend a lot of time trying to formour children in our own image, par-ticularly when we go out in public. Ihad no intention of letting Caleb geton an airplane and go to L.A. lookinglike he did. And, yet, had he dressedthe way I wanted, he would havebeen just another passenger, like thethousands before who had flown in19F, staring out the window andsucking down one thimble-sizedcup of Coca-Cola product. Calebwanted to stand out, to be put onthe stage, to have people notice him.And notice him they did.Oftentimes, our PIDD kids get rec-

ognized for the wrong reason: he’schronically ill; he’s got too manyabsences at school; he can’t play rightnow. But for one day last month,Caleb was recognized for somethingpositive, something that he wanted.He was the Captain.That hat, now soiled after much

overuse, is more valuable than I everwould have imagined.

MARK HAGGARD is a highschool teacher and footballcoach, and has three chil-

dren, two of whom have CVID. He andhis wife, Cheryl, also operate Under theHood Ministries at www.underthehoodministries.org.


http://www.underthehood


IN YEARS PAST when the McFallsfamily would attend church onSundays, someone new to the con-gregation would hear the whirringpumps and invariably ask, “What’sthat noise?” Then a church regularwould lean in and whisper, “That’sjust the McFalls boys. I’ll explain later.”Brothers Keegan and Konner infusedat church and were pretty open abouttheir common variable immune disease(CVID) when they were younger, butthe two take opposite approachestoday. Keegan, 22, remains candidabout his condition, not hesitatingto tell friends, classmates or anyoneelse. But Konner, 24, prefers to keepquiet about his condition. This differ-ence is not uncommon. Many wrestlewith the decision of when — orwhether — to reveal their medicalcondition to others.“I don’t want people to feel sorry

for me,” Konner says. “I want themto get to know me and who I am,not the things I have. I’m the kind ofguy who doesn’t like a lot of sympathy.”Konner was so adept at hiding hisCVID that when he lived in a dorm, hisroommates had no idea. “I would justsit in my room doing my treatment withmy door closed, work on homeworkor watch a movie,” the Lacey, Wash.,resident says. When he did reveal hiscondition to some of his friends, theywere surprised, since Konner is alwayson the go and seems relatively healthy.

On the other hand, Keegan feelsit’s important to tell others about hisCVID. “All my friends pretty muchknow already,” the Brigham YoungUniversity student says. He adds thathe tries to make a joke out of it andthat he’s never had a negative reaction.“I’d be like, ‘Are you afraid of needles?’”he says, making the experience lessawkward for his friends. “It’s some-thing that’s just part of my life. I don’thave a problem with it, and if they havea problem with it, it’s their problem.” The fear of what others think or how

they’ll react is a big reason manypeople with chronic conditions don’tdiscuss their diagnosis with others.But some argue that’s precisely whypeople should talk about it: It nor-malizes it and provides a chance toeducate others. Kris McFalls, Keeganand Konner’s mother, says that backin the early ’90s, when her sonswere young, people thought the

kids hadAIDS. So, the

family wrote aletter that clarified the

boys’ health problems andleft it on file at the school.

“You take the fear out of it, andthat’s what it was — fear,” she says.“They didn’t understand back then.I felt educating them and teachingthem to be more open about ittook the fire out of it.” While Kris says it’s a very personal

decision, safety concerns can be anoverriding factor. “For my kids, mybiggest worry wasn’t that someonewould walk away from them thinkingthey would get contaminated, but Iworried about them being unwittinglyexposed to something,” she says. Krissays it concerned her that Konnerdidn’t tell any of his college roommates.“Yes, it’s his business and that’s hisright, but if he had a problem no onewould ever know. They didn’t knowthat they should stay away from himif they had a cold.”Like the McFalls brothers, Jordan

Leventhal grew up in a split-decisionhousehold: His father and sister keep

To Disclose or Not DiscloseThe personal decision to tell others about a condition lies in what the individual feels most comfortable with and how it’s communicated.

By Jennifer Kester



their CVID under wraps, but the 21-year-old has no qualms about revealinghis condition. “I have CVID, CVIDdoesn’t have me,” he says. “I thinkit’s important because people needto learn about it, and there needs tobe more public awareness of what it is.It’s something we have to be proac-tive about, something we’re gettingmoney for to do testing andresearch.”Leventhal finds that telling others

gives him a good support base. Whenhe was in boarding school, his friendswould keep him company duringhis infusions. Now as a student atCuyahoga Community College inCleveland, Ohio, he works with thecollege disabilities office so that histeachers understand his condition.The paramedic major isn’t worriedabout disclosing his condition topotential employers after graduation.“They don’t need to know about ituntil I take a job,” he says. “Legally,they can’t ask about it and I don’tlegally have to disclose it. And if I dodisclose it, I have the Americans withDisabilities Act [to protect my rights].” Telling employers about a chronic

illness is a common fear. Arizona momKelliann Conner says her and her twodaughters’ primary immune diseasehas made it hard in the workplace.“I have lost jobs because of … missingtoo much time,” says Kelliann, 40, anow-unemployed medical worker whohad to stay home often to take careof her sick kids. The condition alsobecame an issue at work because ofthe cost of health insurance. Kelliann’shusband was a vice president andthe acting president of a small com-pany when he was approached byan insurance agent who said that

the family of one of the employeeswas costing a fortune. The agent,who had no idea this was the Connerfamily, insinuated that if the employeewasn’t going to be there the followingyear, the agent could renew thecompany’s policy at the same rate.Otherwise, the premium would bemuch higher. People with chronic conditions aren’t

afraid of telling only employers abouttheir illness. Telling loved ones provesto be an obstacle as well. Many findit hard to gauge when to tell someonethey’re dating.Erika Lawrence, an associate profes-

sor in the department of psychology

at the University of Iowa and an IGLiving advisory board member, saysthat while the decision about whetherto inform others depends on thecontext — how well you know theperson and what kind of person heor she is — revealing your conditionadds intimacy and increased support,which in turn offer health benefits:“Some of the research I do showsthat appropriate support really buffersthe effect of stress on physical andpsychological health. So if one isfeeling the stress of being ill and

not allowing people close to themto show support, that can actuallyincrease the symptoms.” The first things people must do when

considering whether to disclose theircondition is to carefully choose whomto tell and to find the right time,Lawrence says. Then, figure out whatthe concern is. Instead of judgingothers’ fears, just accept them anddon’t let them prevent you fromtelling others. Most important, shesays, people have to be comfortablewith their conditions and want thesupport. People have to let theirloved ones know how they wantthem to respond and what theyneed from them. “In a work rela-tionship, it’s a lot more complicated,”Lawrence says. “But in general, thesekinds of disclosures — if the personcan be clear about how he wants tobe treated — it can actually increasethe quality of the relationship.”For those still weighing whether

to disclose a chronic condition,Leventhal offers some advice: “Takethe risk and tell them. You don’twant to tell people the first day youmeet them, but on the other hand,there’s nothing to be ashamed of. Youdidn’t do it to yourself. It happenedto you.”

JENNIFER KESTER is a SanDiego-based writer and

editor specializing in health and lifestyleissues.

Editor’s Note: For a discussion about the legalobligations of disclosure, refer to the story onpage 10.

The fear of what othersthink or how they’ll react

is a big reason manypeople with chronic

conditions don’t discusstheir diagnosis with others.



Infusion pumps allow for the mechanical administration ofinfusions when it is impractical for a person to manuallyinfuse medication. Many factors are considered whenordering an infusion pump, including expense, reliability,volume of medication to be infused, type of medication tobe infused and length of infusion, to name a few. In addition,infusion pumps can be programmed to provide continuousinfusions, intermittent infusions or bolus infusions. Continuous infusions usually consist of pulses of infusion

with a rate dependent on the programmer’s specifications.The pump can be titrated up or down simply by changingthe flow rate of the infusion. Generally lasting for severalhours and possibly for days, many types of intravenoustherapies can be given with this method. Syringe drivers,another type of pump offering a continuous infusion, alsoprovides pulses of medication at a set rate. However, theyalso produce high, but controlled pressures and, therefore,are good choices for subcutaneous infusions. Syringedrivers are also useful for delivering IV medications overthe course of several minutes, which saves staff time andreduces medication errors.

Intermittent infusion pumps are well-suited for the patientreceiving antibiotic therapies. They can be programmedto infuse at selected times throughout the day or night.Bolus infusion pumps, or patient-controlled infusion

pumps, allow patients to receive medication based ontheir symptoms or comfort level, at preset intervals. Thistype of pump is generally utilized for patient-controlledanalgesia.It is important to note that many pumps come with their

own proprietary tubings, syringes and cassettes, most ofwhich are not interchangeable. However, some pumps donot use proprietary products, but specific brands and/orsizes must be used. Additionally, many infusion pumpsrequire routine preventative maintenance. It is of criticalimportance that a pump be checked yearly, or when rec-ommended, to ensure proper infusion rates, volumesadministered and timing.

NANCY CREADON, RN, is vice president of VaxAmerica, a pro-

gram offered by the specialty pharmacy of FFF Enterprises, which

specializes in biopharmaceutical management and distribution.

An Overview of PumpsBy Nancy Creadon, RN

Graseby MS15A

Intrapump CronoS-PID 50

Micrel MP101

RMS MedicalFreedom 60

Smith CADD Prizm

6.5"L x 2.1” Wx 0.9"D

3.3”L x 2.1”W x 1.6”H

6.5" L x 1.57" W x 0.9" D

12" L x 4.5" W x 1.6" H

5.6" L x 4.1" W x 1.7" D

6 oz

4.93 oz

5.6 oz

14 oz

13.8 oz

no

syringes

no

�xed �owrate tubing

cassette with tubing

yes

yes

yes

no

yes

yes

yes

yes

no

yes

middle

high

middle

lowest

high

25ml

50ml

20ml

60ml

100ml in cassette; more in an IV bag

9V battery

CR 123A 3VLithium battery

6 AAA batteries

manual

9V battery

www.marcalmedical.com/GrasebyMS16A_SCIG_IVIGHourlyPump.htm

www.intrapump.com/ambulatory/cronoS-PID50.htm

www.micrelmed.com/interior/products/micropump003.htm

www.rmsmedicalproducts.com/Freedom60info.htm

www.mtrhealth.com/product.aspx?pid=322

Size

(pum

p on

ly)

Rate

var

iabl

eCo

st

Alar

ms

Pow

er so

urce

Link

s

Wei

ght

(ba

tter

y in

clud

ed)

Prop

rieta

ry

equ

ipm

ent

Flui

d ca

paci

ty p

er sy

ringe

or

cass

ette

Pum

p

Pump Comparison Chart


http://www.marcalmedical.com/Graseby

http://www.intrapump.com/ambulatory/

http://www.micrelmed.com/interior/

http://www.rmsmedicalproducts.com/

http://www.mtrhealth.com/product.aspx

Graseby

The Graseby 3400offers a wide rangeof infusion rates.Unlike many othersyringe drivers, itis compatible with

many syringe sizes and tubing, which makes it cost-effectiveas there are no dedicated disposables. The operationis simple, and it features an easy-to-read display. TheGraseby 3400 runs on batteries and also requires at leastyearly maintenance.(800) 628-9214; www.marcalmedical.com

IntrapumpInfusionSystems

The Crono S-PID50 has become very desirable due to itssmall and compact size. It is designed with subcutaneousimmunoglobulin in mind for the home setting. It offerscontinuous administration and bolus administration ofmedications and has a very high PSI and occlusion alarms,appropriate for highly viscose medications. The CronoS-PID50 runs on batteries.(866) 211-7867; intrapump.com

Micrel MedicalDevices

The Micrel MP101syringe driver pro-vides infusion ther-apy for a wide

range of applications. It is an efficient infusion systemfor delivery of small volume medications, and can beused in both the homecare and hospital setting. Featuresinclude a simple rate setting with an LCD display, clearidentification of alarms detected and a double micro-processor. It is lightweight and portable, has an ultra-lowbattery consumption, and comes with a shoulder holster

for ambulatory use, plastic carrying case, operatinginstructions and a set of batteries.+ 30 210 6032333; www.micrelmed.com

RMS MedicalProducts

The innovativeFreedom 60 pumprequires no electricityor batteries; thepatient just needs towind it up. It utilizesproprietary tubing to

administer subcutaneous infusions at predetermined rates.With no bells and whistles, it is very portable and extremelyeffective. The Freedom 60 requires no preventive main-tenance. While it may be a bit larger that some of theambulatory competitors, its ease of use has made it avery popular choice for subcutaneous therapies.(845) 469-2042; www.freedom60.com

Smith Medical

CADD pumps comein many models thatare specific to the typeof treatment beingadministered. Thepumps are consideredto be ambulatory, butthey can be mountedto a pole if the patientwishes, especially if

infusing during the night. CADD pumps run on batteriesor can be plugged in, and they are small and portable.The pumps may be utilized for continuous, intermittentand subcutaneous therapies, are programmable and canbe used with many therapies. Routine maintenance isrequired at least yearly. (800) 426 2448; www.smiths-medical.com/brands/cadd


Directory of Pump Products(see also the Pump Product Comparison Chart)

http://www.marcalmedical.com

http://www.micrelmed.com

http://www.freedom60.com

http://www.smiths-medical.com/


Living Well withAutoimmune Disease

What Your Doctor Doesn’tTell You … That You Needto Know

Author: Mary ShomonPublisher: HarperCollins, New York, NY, (212) 207-7000,www.harpercollins.com

Living Well With Autoimmune Disease is a completeguide to understanding the mysterious and often diffi-cult-to-pinpoint autoimmune disorders. It is written bya bestselling health writer and patient advocate whobelieves in empowering patients with both conventionaland alternative information, resources and self-care tacticsthat help get a proper diagnosis and life-changingtreatment. Featured are first-person accounts fromautoimmune disease patients, recommendations andtreatment suggestions from some of the nation’s leadingpractitioners, a detailed Risk Factors and SymptomsChecklist that you can take to your practitioner to aidin diagnosis, information on the latest innovative con-ventional and alternative treatments for autoimmuneconditions, a detailed resources section featuringpatient support groups, hotlines, websites, practitionersand more to help you in your effort to live well, and alook at the future of autoimmune disease diagnosisand treatment.

You Can Cope with Peripheral Neuropathy

365 Tips for Living a Full Life

Authors: Mims Cushing andNorman Latov, MDPublisher: Demos Health, New York, NY, (800) 532-8663,www.demospub.com

You Can Cope with Peripheral Neuropathy, written byboth a patient-expert and a doctor, is a resource and guidefor anyone living with peripheral neuropathy or for thosewho suspect they have it but have yet to be diagnosed.

Peripheral neuropathy is a common disease, affectingupward of 20 million Americans, and yet most people havenever heard of it. It causes pain and numbness in one’shands and feet. The pain is described by those who have itas a tingling or burning sensation in the limbs, while thenumbness is often compared to the feeling of wearing athin stocking or glove. Because its extent and importancehave not yet been adequately recognized, the disease isoften misdiagnosed or thought to be a side effect ofanother disease, such as diabetes, cancer or kidney failure.The book covers topics that range from what to ask

your doctor, to advice on traveling and making yourhome easier to navigate, to finding a support group,to using vitamins and herbs for treatment. The authors’goals in writing the book are threefold. First, they hopethat the medical information will explain how physiciansapproach the diagnosis and treatment of neuropathy,and answer some frequently asked questions. Second,they want to help people with the 365 tips gatheredfrom exercise trainers, professionals specializing inmany different fields, lecturers, neurologists, caretakers,books and other resources. And, last, with the personalhistories written by people affected by peripheral neu-ropathy, they look to inspire and further educate peopleabout this confusing disease.

The Autoimmune Diseases, 4th Edition

Authors: Noel Richard Rose and Ian R. MackayPublisher: Academic Press, St. Louis, Mo., (800) 545-2522, www.elsevierdirect.com

While this edition of The Autoimmune Diseases hasbeen in print since 1996, it is now available for a freedownload at 4ebooks.org. Added to the fourth editionis a more in-depth look at the immune mechanismsunderlying autoimmunity and autoimmune disease. Thenewly incorporated material combines common themesunderlying inductive and effector mechanisms and ther-apies that relate generally to the autoimmune disorders.Also included are tissue-specific interventions to arrestor “cure” autoimmune disease; bone marrow eradicationand replacement; basic science and clinical medicine;and boxed points to emphasize key features of eachchapter.


http://www.harpercollins.com

http://www.demospub.com

http://www.elsevierdirect.com



Ataxia Telangiectasia (A-T)

Websites• A-T Children’s Project: www.atcp.org

Chronic Inflammatory DemyelinatingPolyneuropathy (CIDP)

Websites• GBS/CIDP Foundation International: www.gbs-cidp.org

Online Peer Support• Barbara’s CIDP/GBS Site: www.geocities.com/HotSprings/Falls/3420

Evans Syndrome

Online Peer Support• Evans Syndrome Research and Support Group: www.evanssyndrome.net

Guillain-Barré Syndrome (GBS)

Websites• GBS/CIDP Foundation International: www.gbs-cidp.org

Online Peer Support• GBS & CIDP Discussion Forum – UK Bulletin Board (For Ireland and England):

www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi

• GBS/CIDP Foundation International Discussion Forums: www.gbs-cidp.org/forums.

• GBS Support Group and Chat Room – UK:www.jsmarcussen.com/gbs/uk/chat.htm

Idiopathic Thrombocytopenic Purpura (ITP)

Websites• ITP Support Association – UK: www.itpsupport.org.uk

• National Heart, Lung and Blood Institute: www.nhlbi.nih.gov/health/dci/Diseases/Itp/ITP_WhatIs.html

• Platelet Disorder Support Association: www.pdsa.org

Kawasaki Disease

Websites• American Heart Association (how the disease affects the heart):

www.americanheart.org/presenter.jhtml?identifier=4634

• Kawasaki Disease Foundation: www.kdfoundation.org

• KidsHealth: http://kidshealth.org/parent/medical/heart/kawasaki.html

Mitochondrial Disease

Websites• United Mitochondrial Disease Foundation: www.umdf.org

Multifocal Motor Neuropathy (MMN)

Websites• The Neuromuscular Center at Washington University:

www.neuro.wustl.edu/neuromuscular

• The Neuropathy Association: www.neuropathy.org

Multiple Sclerosis (MS)

Websites• All About Multiple Sclerosis: www.mult-sclerosis.org/index.html

• Multiple Sclerosis Association of America: www.msaa.com

• Multiple Sclerosis Foundation: www.msfacts.org

• National Multiple Sclerosis Society: www.nationalmssociety.org

Online Peer Support• Friends with MS: www.FriendsWithMS.com

• MSWorld’s Chat and Message Board: www.msworld.org

Myasthenia Gravis (MG)

Websites and Chat Rooms• Myasthenia Gravis Foundation of America (MGFA): www.myasthenia.org

Online Peer Support• Autoimmune Information Network Inc.: www.aininc.org

Myositis

Websites

• International Myositis Assessment and Clinical Studies Group: https://dir-apps.niehs.nih.gov/imacs/index.cfm?action=home.main

• The Cure JM Foundation: curejm.com

Online Peer Support• Juvenile Myositis Family Support Network:

www.curejm.com/family_support/index.htm

The mission of The Myositis Association,www.myositis.org, is to find a cure forinflammatory and other relatedmyopathies, while serving thoseaffected by these diseases.(202) 887-0088

For a more comprehensive list of resources, visit the Resources page at www.IGLiving.com.


http://www.myositis.org


http://www.atcp.org

http://www.gbs-cidp.org

http://www.geocities.com/HotSprings/Falls/3420

http://www.evanssyndrome.net

http://www.gbs-cidp.org

http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi

http://www.gbs-cidp.org/forums

http://www.jsmarcussen.com/gbs/uk/chat.htm

http://www.itpsupport.org.uk

http://www.nhlbi.nih.gov/health/dci/Diseases/Itp/ITP_WhatIs.html

http://www.pdsa.org

http://www.americanheart.org/presenter.jhtml?identifier=4634

http://www.kdfoundation.org

http://kidshealth.org/parent/medical/heart/kawasaki.html

http://www.umdf.org

http://www.neuro.wustl.edu/neuromuscular

http://www.neuropathy.org

http://www.mult-sclerosis.org/index.html

http://www.msaa.com

http://www.msfacts.org

http://www.nationalmssociety.org

http://www.FriendsWithMS.com

http://www.msworld.org

http://www.myasthenia.org

http://www.aininc.org

https://dir-apps.niehs.nih.gov/imacs/index.cfm?action=home.main

http://www.curejm.com/family_support/index.htm


• Myositis Association Community Forum: www.myositis.org

• Myositis Support Group: www.myositissupportgroup.org

• Myositis Support Group – UK: www.myositis.org.uk

Pemphigus and Pemphigoid

Websites• The International Pemphigus and Pemphigoid Foundation: www.pemphigus.org

Peripheral Neuropathy (PN)

Websites• Neuropathy Action Foundation: www.neuropathyaction.org

Online Peer Support

• Calgary Neuropathy Support Group: www.calgarypners.org

Primary Immune Deficiency Disease (PIDD)

Websites • American Academy of Allergy, Asthma & Immunology: www.aaaai.org

• International Patient Organization for Primary Immunodeficiencies (IPOPI):www.ipopi.org

• Michigan Immunodeficiency Foundation: www.midf.org

• National Institute of Child Health and Human Development (NICHD) (Click on “Health Information and Media” tab and search for “primary immunodeficiency”: www.nichd.nih.gov

• New England Primary Immunodeficiency Network: www.nepin.org

• Rainbow Allergy-Immunology: www.rainbowbabies.org/immunology

• Team Hope (for families and patients in New England): www.teamhope.info

Online Peer Support• Jeffrey Modell Foundation Message Board: www.info4pi.org

• Rhode Island peer group:http://health.groups.yahoo.com/group/RhodeIslandPIDD/

Scleroderma

WebsitesScleroderma Center: http://scleroderma.jhmi.edu• Scleroderma Foundation: www.scleroderma.org

• Scleroderma Research Foundation: www.srfcure.org

Online Peer Support• CureZone.com: curezone.com/forums/f.asp?f=404

• International Scleroderma Network: www.sclero.org/support/forums/a-to-z.html

Stiff-Person Syndrome (SPS)

Websites• American Autoimmune Related Diseases Association Inc.: www.aarda.org

• Autoimmune Information Network Inc.: www.aininc.org

• Living with Stiff Person Syndrome (personal account): www.livingwithsps.com

General Resources

Other Organization WebsitesThese organizations provide information about various disease states, which canbe found by conducting a search of the disease state name.

• Advocacy for Patients with Chronic Illness: www.advocacyforpatients.org

• Alliance for Plasma Therapies (fair access to plasma therapies): www.plasmaalliance.org

• American Autoimmune Related Diseases Association (AARDA): www.aarda.org

• American Chronic Pain Association (ACPA): www.theacpa.org

• Band-Aides and Blackboards: www.lehman.cuny.edu/faculty/jfleitas/bandaides

• Cleveland Clinic: www.clevelandclinic.org/health

• eMedicine from WebMD: emedicine.medscape.com

• FamilyDoctor.org: www.familydoctor.org

• Johns Hopkins Medicine: www.hopkinsmedicine.org

• KeepKidsHealthy.com (pediatrician’s guide to children health and safety): www.keepkidshealthy.com.

• Kids Health (medical and emotional impact of caring for an ill child):www.kidshealth.org/parent/system/ill/seriously_ill.html

• Mayo Clinic: www.mayoclinic.com

• National Committee for Quality Assurance (detailed report cards on health plans, clinical performance, member satisfaction and access to care): www.ncqa.org.

• National Institute of Neurological Disorders and Stroke (NINDS):www.ninds.nih.gov/disorders/disorder_index.htm

• National Institutes of Health: www.niams.nih.gov/hi/topics/pemphigus/pemphigus.htm

• National Organization for Rare Disorders (disease-specific support groups and virtual communities for patients and caregivers): www.rarediseases.org

• Office of Rare Diseases Research: rarediseases.info.nih.gov

• Patient Advocate Foundation (patient access to care, maintenance of employment and financial stability): www.patientadvocate.org

• WebMD (medical reference): www.webmd.com

The nonprofit Patient Services Incorporated,www.uneedpsi.org, specializes in healthinsurance premium, pharmacy co-paymentand co-payment waiver assistance for peoplewith chronic illnesses. (800) 366-7741

http://www.myositis.org

http://www.myositissupportgroup.org

http://www.myositis.org.uk

http://www.pemphigus.org

http://www.neuropathyaction.org

http://www.calgarypners.org

http://www.aaaai.org

http://www.ipopi.org

http://www.midf.org

http://www.nichd.nih.gov

http://www.nepin.org

http://www.rainbowbabies.org/immunology

http://www.teamhope.info

http://www.info4pi.org

http://health.groups.yahoo.com/group/RhodeIslandPIDD/

http://scleroderma.jhmi.edu

http://www.scleroderma.org

http://www.srfcure.org

http://www.sclero.org/support/forums/a-to-z.html


http://www.aarda.org

http://www.aininc.org

http://www.livingwithsps.com

http://www.advocacyforpatients.org

http://www.plasmaalliance.org

http://www.aarda.org

http://www.theacpa.org

http://www.lehman.cuny.edu/faculty/jfleitas/bandaides

http://www.clevelandclinic.org/health

http://www.familydoctor.org

http://www.hopkinsmedicine.org

http://www.keepkidshealthy.com

http://www.kidshealth.org/parent/system/ill/seriously_ill.html

http://www.mayoclinic.com

http://www.ncqa.org

http://www.ninds.nih.gov/disorders/disorder_index.htm

http://www.niams.nih.gov/hi/topics/pemphigus/pemphigus.htm

http://www.rarediseases.org

http://www.patientadvocate.org

http://www.uneedpsi.org

http://www.webmd.com


Education and Disability Resources• Americans with Disabilities Act of 1990: www.ada.gov

Provides protection for people with disabilities from certain types of discrimination,and requires employers to provide some accommodations of the disability.

• Continuation of Health Coverage — Consolidated Omnibus BudgetReconciliation Act (COBRA): www.dol.gov/dol/topic/health-plans/cobra.htm

• DisabilityInfo.gov: www.disabilityinfo.govU.S. Federal government’s disability-related information and resources.

• Individuals with Disabilities Education Improvement Act of 2004: http://idea.ed.gov/explore/home

• National Disabilities Rights Network: www.ndrn.orgThis website offers a search tool to find resources in your state to assist with school rights and advocacy.

• Social Security: www.ssa.gov/disability

• U.S. Department of Education Website: www.ed.govThis federal government website offers a parents section titled “My Child’sSpecial Needs.”

• U.S. Department of Health and Human Services, Office of Civil Rights:www.hhs.gov/ocr/office/news/2008/discrimdisab.htmlSpells out your rights under Section 504 of the Rehabilitation Act.

Medical Research Studies• ClinicalTrials.com: www.clinicaltrials.com

This site has a registration form to request that you be notified aboutrecruitment for future studies.

• ClinicalTrials.gov: www.clinicaltrials.govA registry of federally and privately supported clinical trials conducted inthe United States and around the world.

Food Allergies• Allergic Disorders: Promoting Best Practice: www.aaaai.org

• American Partnership for Eosinophilic Disorders: www.apfed.org

• Food Allergy and Anaphylaxis Network: www.foodallergy.org

• National Institutes of Health, National Institute of Allergy and InfectiousDiseases (2004). Food Allergy: An Overview (NIH Publication No. 04-5518): www.niaid.nih.gov/publications/pdf/foodallergy.pdf

• Sicherer, S.H. (2006). “The Complete Peanut Allergy Handbook: Understandingand Managing Your Child’s Food Allergies,” Johns Hopkins Press.

• World Allergy Organization: www.worldallergy.org

Product Information• Influenza and the influenza vaccine: www.cdc.gov/flu or call (800) CDC-INFO:

(800) 232-4636

• IVIG Carimune NF: www.carimune.com

• IVIG Flebogamma: www.grifolsusa.com/pdfs/flebo_14Jun05.pdf

• IVIG Gammagard Liquid: www.gammagardliquid.com

• IVIG Gammagard S/D: www.immunedisease.com

• IVIG Gamunex: www.gamunex.com

• IVIG Octagam: www.octapharma.com

• IVIG Privigen: www.privigen.com

• SCIG (subcutaneous immune globulin) Vivaglobin: www.vivaglobin.com

IG Manufacturer Websites• Baxter: www.baxter.com

• CSL Behring: www.cslbehring.com

• Grifols: www.grifolsusa.com

• Octapharma: www.octapharma.com

• Talecris: www.talecris.com

Pump and Infusion Sets Websites

• EMED Corporation: www.safetymedicalproducts.com

• Graseby Marcal Medical: www.marcalmedical.com

• Intra Pump Infusion Systems: www.intrapump.com

• Micrel Medical Devices: www.micrelmed.com

• Norfolk Medical: www.norfolkmedical.com

• Repro Med Systems, Inc: www.rmsmedicalproducts.com

• Smith Medical: www.smiths-medical.com/brands/cadd

Have something to add to these pages? Please send your suggestionsfor additions to the IG Living Resource Directory to [email protected].

Is Your Nurse an IG Professional?

3rd Annual Advanced Practicum forProfessionals Providing Immunoglobulin

Therapy: IVIG and SCIG

Saturday, October 24, 2009

Hilton Garden Inn

Cleveland, OH

Course Director:

Kimberly Duff, RN, BSN

For more information:

216-983-1239

or 800-274-8263

[email protected], http://cme.case.edu

CEUs for nurses and pharmacists will be provided


http://www.ada.gov

http://www.dol.gov/dol/topic/health-plans/cobra.htm

http://www.disabilityinfo.gov

http://idea.ed.gov/explore/home

http://www.ndrn.org

http://www.ssa.gov/disability

http://www.ed.gov

http://www.hhs.gov/ocr/office/news/2008/discrimdisab.html

http://www.clinicaltrials.com

http://www.clinicaltrials.gov

http://www.aaaai.org

http://www.apfed.org

http://www.foodallergy.org

http://www.niaid.nih.gov/publications/pdf/foodallergy.pdf

http://www.worldallergy.org

http://www.cdc.gov/flu

http://www.carimune.com

http://www.grifolsusa.com/pdfs/flebo_14Jun05.pdf

http://www.gammagardliquid.com

http://www.immunedisease.com

http://www.gamunex.com

http://www.octapharma.com

http://www.privigen.com

http://www.vivaglobin.com

http://www.baxter.com

http://www.cslbehring.com

http://www.grifolsusa.com

http://www.octapharma.com

http://www.talecris.com

http://www.safetymedicalproducts.com

http://www.marcalmedical.com

http://www.intrapump.com

http://www.micrelmed.com

http://www.norfolkmedical.com

http://www.rmsmedicalproducts.com

http://www.smiths-medical.com/brands/cadd



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