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The HypoPARA-Post Improving Lives Touched by Hypoparathyroidism
Volume 21, Issue 2 1994-2015 2nd Quarter 2015
REPLACE: A Pivotal Trial for PTH 1-84 ~ 9th Int’l Conference ~ Tips to Making Traveling with Hypopara Enjoyable & Safer ~ State/Country Basket Auction ~ Hope For a Healthy Future ~ Let’s Change How We
Think about Living with Hypoparathyroidism ~ Polly’s Pancake Parlor - HypoPARA Reflections
P.O. Box 2258
Idaho Falls, ID
83403 USA
(208) 524-3857 (USA)
(866) 213-0394 (toll free)
E-Mail:
A Tax-Exempt Non-Profit Corporation 82-0505424
Disclaimer Statement
The Hypoparathyroidism Association, Inc. should NOT be used as a substitute for professional medical and psychological treatment. Any suggestions
we may offer in our quarterly newsletter, on our website, or in any e-mail correspondence should be considered as ‘suggestions’ only. Any changes in
your current medical treatment you may want to consider should be discussed with your personal physician and should NOT be undertaken without
his/her concurrence and support to ensure proper medical treatment and follow-up.
Our suggestions and comments are based on our collective experience, both personal and collective. While the suggestions and comments we have
offered have been successful for many individuals, we do not mean to imply they will be successful for every individual and under every circumstance.
Proper medical treatment is intended to be a personal matter between the patient and his/her own physician. Any suggestions or comments offered
are intended to help the patients and their physician(s) determine the best course of action.
Inside this issue:
Jim’s Corner 2
REPLACE: A Pivotal Trial for PTH 1-84 (Natpara®) in Hypoparathyroidism 3
Come to the 9th Int’l Conference on Hypoparathyroidism – Register Today! 7
Tips To Make Traveling with Hypoparathyroidism More Enjoyable and Safer 8
NORD Regional Meetings on Hypoparathyroidism 9
State/Country Basket Auction 9
Hope for a Healthy Future 10
HypoPARA Reflections – Living With Hypoparathyroidism 12
Let’s Change How We Think About Living With Hypoparathyroidism – A Lesson in Love
14
Lakeland Man Wields Art to Combat Condition Affecting His Brain 15
Links to Articles on Hypoparathyroidism 18
THE HypoPARA-Post
Volume 21, Issue 2, 2015
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©2014 HypoPARAthryoidism Association. All rights reserved. No portion of this newsletter, partial or whole, may be reproduced (either
digitally or in print) without permission of the HypoPARAthyroidism Association - [email protected]
Several years ago, NPS Pharmaceu-
ticals invited me to speak on behalf
of the HypoPARAthyroidism Asso-
ciation at a conference of medical
doctors who were some of the lead-
ing experts in the world of Hypo-
parathyroidism.
It was one of the first meetings de-
voted specifically to hypoparathy-
roidism. The resulting paper
helped fuel additional research,
clinical trials and greater under-
standing of a rare medical disorder
which has not been well understood
by medical professionals. They
published their paper,
“Hypoparathyroidism in the adult:
epidemiology, diagnosis, patho-
physiology, target Hypoparathy-
roidism in the adult: epidemiolo-
gy, diagnosis, pathophysiology,
target-organ involvement, treat-
ment, and challenges for future
research”, in the Journal of Bone
and Mineral Research in October,
2011.
On May 7-9, 2015, I had the privi-
lege of speaking at the 1st Interna-
tional Conference on: The Diag-
nosis, Management, and Treat-
ment of Hypoparathyroidism in
Florence, Italy. Helen Dahl Hansen,
head of the HPTH Nordic Coun-
tries, also spoke at the same confer-
ence. I will report on that confer-
ence in the next newsletter.
It is wonderful to see that the medi-
cal community no longer considers
patient associations such as
ours as something to be
avoided at all costs or have nothing
to offer them.
A couple of years ago Dr. Maria
Luisa Brandi, University of Flor-
ence in Italy, asked me to write a
chapter on “Advocacy and Hypo-
parathyroidism in the Twenty-
First Century” for a medical text
book on Hypoparathyroidism,
which was published early in 2015.
We hope to be able to reprint that
chapter on our web site.
We, as an Association, and each of
you as patients with hypoparathy-
roidism ARE making a difference
in the medical community. YOU
are important, and, more important-
ly, your opinion and your thoughts
do matter to physicians.
Our Vision is….To Grow, to
cope, to learn, to hope – towards
a cure.
Our Mission is.....To improve
lives touched by Hypoparathy-
roidism through awareness and
support.
Our Values are.....We strive to be
a reliable, dedicated, accessible,
inclusive, empowering resource
while being compassionate and
professional.
The International Conferences on
Hypoparathyroidism, which we
hold every year in June, are an ex-
tension of who we are and why we
exist. Our vision, our mission and
our goals have been the driving
force behind the HypoPARAthy-
roidism Association since we pub-
lished the first newsletter in the fall
of 1994, and is the driving force
today.
They have become an important re-
source not only for the physicians
who are invited to speak, but have
become a valuable resource for the
patients and caregivers who are able
to attend them each year. We provide
the latest information on hypopara-
thyroidism, as well as information
about dealing with the disorder in
your day-to-day lives. The Food and
Drug Administration, FDA, approved
Natpara (PTH 1-84) as the first hor-
mone replacement therapy for hypo-
parathyroidism. I am certain it would
not have happened this year had it not
been for one of our members who had
a grand mal seizure DURING the 1st
International Conference on Hypopar-
athyroidism in April 2006, which
caught the attention of the FDA and
the speakers who were present at the
time.
The effect of having dozens of hypo-
parathyroidism patients and their
caregivers present along with all the
speakers in the same room at the
same time speaks volumes to every-
one. Over 150 people attended our
conference last year.
Are you planning to attend the 9th In-
ternational Conference in Blooming-
ton (Minneapolis), Minnesota, on
June 4-6, 2015?
Are YOU going to help us make a
difference?
I hope to see and meet each of you at
the DoubleTree Inn in a few weeks.
Jim’s Corner by Jim Sanders, President
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Mannstadt M1, Clarke BL2, Vokes T3,
Brandi ML4, Ranganath L5, Fraser
WD6, Lakatos P7, Bajnok L8,
Garceau R9, Mosekilde L10, Lagast
H9, Shoback D11, Bilezikian JP12.
Efficacy and safety of recombinant
human parathyroid hormone (1-84)
in hypoparathyroidism (REPLACE):
a double-blind, placebo-controlled,
randomised, phase 3 study. Lancet
Diabetes Endocrinol. 2013
Dec;1(4):275-83. doi:
10.1016/S2213-8587(13)70106-2.
Epub 2013 Oct 7.
Abstract
BACKGROUND:
Hypoparathyroidism results in im-
paired mineral homoeostasis, includ-
ing hypocalcaemia and hyperphos-
phataemia. Treatment with high-dose
oral calcium and active vitamin D
does not provide adequate or con-
sistent control of biochemical indices
and can lead to serious long-term
complications. We aimed to test the
efficacy, safety, and tolerability of
once-daily recombinant human para-
thyroid hormone 1-84 (rhPTH[1-84])
in adults with hypoparathyroidism.
METHODS:
In this double-blind, placebo-
controlled, randomised phase 3 study
(REPLACE), we recruited patients
with hypoparathyroidism (≥ 18
months duration) aged 18-85 years
from 33 sites in eight countries. Af-
ter an optimisation period, during
which calcium and active vitamin D
doses were adjusted to achieve con-
sistent albumin-corrected serum cal-
cium, patients were randomly as-
signed (2:1) via an interactive voice
response system to 50 μg per day of
rhPTH(1-84) or placebo for 24
weeks. Active vitamin D and calci-
um were progressively reduced,
while rhPTH(1-84) could be titrated
up from 50 μg to 75 μg and then 100
μg (weeks 0-5). The primary end-
point was the proportion of patients
at week 24 who achieved a 50% or
greater reduction from baseline in
their daily dose of oral calcium and
active vitamin D while maintaining a
serum calcium concentration greater
than or the same as baseline concen-
trations and less than or equal to the
upper limit of normal, analysed by
intention to treat. This trial is regis-
tered with ClinicalTrials.gov, num-
ber NCT00732615.
FINDINGS:
Between June 23, 2009, and Feb 28,
2011, 134 eligible patients were re-
cruited and randomly assigned to
rhPTH(1-84) (n=90) or placebo
(n=44). Six patients in the rhPTH(1-
84) group and seven in the placebo
group discontinued before study end.
48 (53%) patients in the rhPTH(1-
84) group achieved the primary end-
point compared with one (2%) pa-
tient in the placebo group
(percentage difference 51.1%, 95%
CI 39.9-62.3; p<0.0001). The pro-
portions of patients who had at least
one adverse event were similar be-
tween groups (84 [93%] patients in
the rhPTH[1-84] group vs 44 [100%]
patients in the placebo group), with
hypocalcaemia, muscle spasm, par-
aesthesias, headache, and nausea
being the most common adverse
events. The proportions of patients
with serious adverse events were
also similar between the rhPTH(1-
84) group (ten [11%] patients) and
the placebo group (four [9%] pa-
tients).
INTERPRETATION:
50 μg, 75 μg, or 100 μg per day of
rhPTH(1-84), administered subcuta-
neously in the outpatient setting, is
efficacious and well tolerated as a
PTH replacement therapy for pa-
tients with hypoparathyroidism.
With the recent Food and Drug Ad-
ministration (FDA) approval of para-
thyroid hormone PTH 1-84
(NatparaÒ) for the treatment of hy-
poparathyroidism (HPTH) in late
January 2015, it is a most opportune
time to summarize and review one of
the pivotal randomized controlled
trials that led to its approval. When-
ever a new drug “makes it to mar-
ket,” generally the first thing that I as
a physician want to know is what
study, or studies, helped lead to its
approval? Was the study or studies
well-designed? How representative
of a patient sample was the study
population compared to that of the
patients being seen in clinical prac-
tice? These are some of the same
questions that we as HPTH patients
should be asking. This will help us
make our individual choices whether
or not to try starting (or continuing)
on the drug. Having read this article,
I believe the answers to these ques-
tions are “yes.” I will first summa-
rize the study and then provide my
commentary at the end.
INTRODUCTION:
Hypoparathyroidism (HPTH) is a
rare disorder in which there is insuf-
ficient production of parathyroid hor-
mone (PTH). Hormone deficiency
states are usually treated by replacing
the deficient hormone; however,
HPTH is currently treated with large
doses of calcium and activated vita-
min D supplements. This does not
always provide adequate or con-
sistent control of symptoms and
complications from the disease, such
REPLACE: A Pivotal Trial for PTH 1-84 (Natpara®) in
Hypoparathyroidism Summary and Review by: Kim L., M.D.
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as calcifications in the kidney, brain,
and elsewhere; kidney stones; and
kidney dysfunction. Human PTH 1-
34, an active fragment of full length
PTH 1-84 as found in the normal
human body, has been studied as a
PTH replacement in HPTH with
positive results. However, PTH 1-34
(Forteoâ) has a shorter half-life,
requiring two or more injections each
day, and has not been approved for
this indication; Forteoâ is only
approved for osteoporosis. In
contrast, recombinant human PTH 1-
84, which is identical in structure to
the PTH found in a normal person,
has a longer half-life, allowing for
once-daily injections for HPTH.
The objective of the REPLACE study
was to test the efficacy, safety, and
tolerability of once-daily flexible
dose (50 mg, 75 mg, or 100 mg)
regimen of recombinant human
parathyroid hormone 1-84 (PTH 1-
84; i.e., what is now called Natparaâ)
in adults with hypoparathyroidism.
METHODS:
(1) Interventions: Subjects were
randomized in a 2:1 ratio to receive
50 μg per day of PTH 1-84 or placebo
for 24 weeks. Each multidose
injection pen cartridge contained a
clear, colourless solution with 14
doses of an identical injection volume
(0.07 ml) for each dose, irrespective
of treatment group or assigned dose.
The 24-week treatment period began
with a 12-week titration phase, during
which doses of active vitamin D were
reduced and, if possible, eliminated,
followed by reduction in oral calcium
doses, while maintaining serum
calcium at or above the concentration
recorded at baseline. During the
titration phase, the investigator could
increase the daily dose of PTH 1-84
at week 2 to 75 μg and again at week
4 up to the maximum dose of 100 μg
until active vitamin D could be
eliminated and oral calcium could be
reduced to 500 mg per day or less.
Patients then entered a 12-week
maintenance phase, when oral
calcium and active vitamin D doses
were adjusted, and daily dose of PTH
1-84 could be reduced, but not
increased, in this phase.
(2) Study Design and Participants:
Randomized, placebo-controlled,
double-blind registration trial,
recruiting patients aged 18-85 years
who had well-documented HPTH for
18 months or longer from 33
outpatient sites in 8 countries: USA,
Canada, Denmark, Hungary,
Belgium, France, Italy, and the UK.
HPTH was defined as hypocalcemia
(low calcium levels) and documented
PTH concentrations below the lower
limit of normal range, recorded on at
least two occasions within the
previous 12 months. Additional
eligibility criteria included:
requirement for active vitamin D and
oral calcium (≥1000 mg daily)
treatment, normal TSH if not on
thyroid hormone replacement therapy
(or if on therapy, stable dose for ≥3
months), and normal magnesium and
serum 25-hydroxyvitamin D
concentrations and kidney function.
Patients and investigators, including
outcome assessors, were unaware of
treatment assignment throughout the
24 week dosing period.
RESULTS:
(1) Patient Demographics and
Baseline Characteristics: A total of
134 patients were included, with 90
randomized to receiving PTH 1-84
and 44 randomized to receiving
placebo. Most patients were women
(78%), of white race (94% in PTH 1-
84 group and 98% in placebo group),
and average age of all patients was
47.5 years. The most common cause
of hypoparathyroidism was
postsurgical HPTH, and the majority
of these were post-thyroid surgeries
(as per correspondence with one of
the study authors). Average duration
of HPTH was 13 years. At baseline,
average oral calcium dose was around
2100 mg per day and average
calcitriol dose was 0.89 mcg per day.
Baseline average albumin-corrected
total serum calcium levels were
similar between groups (2.12 mmol/L
[i.e., 8.48 mg/dL] in the PTH 1-84
group and 2.15 mmol/L [i.e., 8.6 mg/
dL] in the placebo group). Average
urinary calcium excretion exceeded
300 mg per 24 hours in both groups.
Although not reported specifically in
the paper, baseline PTH levels were
low but not zero/undetectable (as per
correspondence with one of the study
authors). Compliance with injection
was excellent for both groups (98%
in the PTH 1-84 group and 96% in
the placebo group).
(2) Primary Outcome: Propor tion
of patients at week 24 who achieved
all three of the following criteria:
50% or greater reduction from
baseline of oral calcium dose; 50% or
greater reduction from baseline of
active vitamin D dose; and
maintenance of a stable albumin-
corrected total serum calcium
concentration ≥ baseline
concentration and ≤ the upper limit of
normal, but ideally within the target
range of 2.0-2.25 mmol/L (i.e., 8.00-
9.00 mg/dL).
(a) Results for primary outcome:
53% of patients in the PTH 1-84
group achieved the primary
endpoint compared with 2% in the
placebo group (percentage
difference 51.1%, 95% confidence
interval [CI] 39.9-62.3; p<0.0001).
(b) Conclusions for primary
outcome: 50 μg, 75 μg, or 100 μg
per day of PTH 1-84, administered
subcutaneously in the outpatient
setting, is efficacious and well
tolerated as a PTH replacement
therapy for patients with HPTH
(3) Secondary Outcomes: (a)
Proportion of patients who were
able to discontinue active vitamin
D while taking 500 mg per day or
less of oral calcium at week 24;
(b) Percentage change from
baseline in prescribed oral
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calcium dose by week 24; and (c)
Changes in frequency of clinical
symptoms of hypocalcemia during
maintenance (weeks 16-24).
(a) Results for secondary out-
come of proportion of patients
who were able to discontinue
active vitamin D while taking
500 mg per day or less of oral
calcium at week 24: Significant
differences between the PTH 1-
84 and placebo groups in the pro-
portion of patients independent
from active vitamin D and reduc-
tion in oral calcium were appar-
ent from week 3 and continued
until week 24.
(b) Results for secondary out-
come of percentage change
from baseline in prescribed oral
calcium dose by week 24: The
PTH 1-84 group had an average
percentage decrease from base-
line in oral calcium dose of -52%
compared with a 6% average per-
centage increase in the placebo
group, which was statistically
significant. The active vitamin D
dose decreased by -78% and -
30% in the PTH 1-84 and placebo
groups, respectively; also statisti-
cally significant.
(c) Results for secondary out-
come of changes in frequency of
clinical symptoms of hypocalce-
mia during maintenance (weeks
16-24): A smaller proportion of
the PTH 1-84 group (33%) re-
ported clinical symptoms of low
calcium than did those in the pla-
cebo group (41%), although this
was not statistically significant.
(4) Safety and Other Outcomes:
(a) Results of 24-hr urinary cal-
cium excretion: At week 24,
average 24-hr urinary calcium
excretion rates had decreased by
73.6 mg per 24 hrs in the PTH 1-
84 group, vs. 83.8 mg per 24 hrs
in the placebo group (not signifi-
cant). Average urinary calcium
excretion rate in the placebo
group declined by a significantly
greater amount from baseline to
week 8 than in the PTH 1-84 group.
Of note, in the placebo group, this
fall in urinary calcium excretion oc-
curred in conjunction with a rapid
fall in serum calcium to lower end of
the target range; whereas, in the PTH
1-84 group, albumin-corrected serum
calcium concentrations increased at
the start of treatment, despite large
reductions in both oral calcium and
active vitamin D doses, and with still
a slight decrease in urinary calcium
excretion.
(b) Results of serum phosphate con-
centrations: Average serum phos-
phate concentrations were similar (at
upper-normal limits) in both groups
at baseline, but fell significantly
more in the PTH 1-84 group than in
the placebo group by week 24.
(c) Results of serum 25-
hydroxyvitamin D concentrations: Average serum concentrations of 25-
hydroxyvitamin D (25-OH vit D)
decreased more in the PTH 1-84
group (-28.0 nmol/L) by week 24
than in the placebo group (-3.5 nmol/
L). Average serum 1,25-
dihydroxyvitamin D concentrations
were maintained in the normal range
and were similar in both groups at
baseline and at week 24.
(d) Results of adverse events: The
overall incidence of adverse events
(AE) was similar in both groups. By
week 24, 98% of patients in the PTH
1-84 and 100% of patients in the pla-
cebo groups reported at least one
AE, the most common being hy-
pocalcemia, muscle spasm, numb-
ness/tingling (paresthesias), head-
ache, and nausea. A total of ten
(11%) patients in the PTH 1-84
group and four (9%) in the placebo
group had serious AE; and only one
of these was considered treatment
related (hypercalcemia requiring
brief hospital stay in the PTH 1-84
group). This patient has continued
receiving PTH 1-84 for more than 24
months in the subsequent extension
studies without any further epi-
sodes of hypercalcemia (high cal-
cium levels). Hypocalcemia (low
calcium levels) was frequently
reported as an AE in both groups
(26% in the PTH 1-84 group vs.
21% in the placebo group).
DISCUSSION:
This randomized controlled trial pro-
vided evidence that PTH 1-84 re-
placement therapy is effective in
treating HPTH compared to oral cal-
cium and active vitamin D alone
(placebo group). Only 2% of the pla-
cebo group vs. 53% of the PTH 1-84
group reached the primary outcome
(50% or greater reduction in baseline
doses of calcium and vitamin D, and
maintenance of stable serum albumin-
corrected calcium levels (ideally in
range of 2.0-2.25 mmol/L; i.e., 8.00-
9.00 mg/dL). Phosphate levels im-
proved/decreased with PTH 1-84 use,
and 24-hr urine calcium excretion did
not increase. Patients recruited for
this trial were representative of typi-
cal patients seen in clinical practice
with the majority (66%) requiring
high doses of active vitamin D (>0.5
mcg calcitriol per day) and about a
third (31%) requiring high doses of
calcium (>2 g per day).
The 24-hr urinary calcium excretion
in the placebo group was lower at the
end of the trial than at baseline, since
their average serum calcium concen-
tration was also lower at the end of
the study. This finding is therefore
expected, since even small changes in
serum calcium concentrations lead to
substantial changes in the amount of
calcium filtered and excreted by the
kidneys. Although the PTH 1-84
group’s 24-hr urinary calcium excre-
tion did not drop by as much as the
placebo group, this is still an encour-
aging finding since serum calcium
concentrations remained relatively
stable despite reductions in oral calci-
um and active vitamin D. The PTH 1
-84 replacement therapy may have
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this advantage of enhancing calcium
reabsorption from the kidneys, which
ultimately could reduce the risk of
long-term kidney stones and kidney
damage (from nephrocalcinosis).
One limitation of this study was that
the short-term design did not allow
for evaluation of bone and kidney
effects of PTH 1-84 therapy. Another
limitation was that the dose schedule
defined by the protocol did not allow
increase in the study drug dose after
week 5 or to greater than 100 mcg per
day. Thus, it is unclear whether some
patients might have been able to
achieve the primary outcome with
higher doses. Strengths of the study
included the flexible dosing and titra-
tion algorithm, which can be readily
implemented in clinical practice, as
well as the relatively large number of
patients enrolled in this study
(especially considering HPTH is a
rare disease).
In conclusion, the findings of the RE-
PLACE study showed that PTH 1-84
(now known as Natparaâ) is effective
as a replacement for PTH in patients
with HPTH. The 50 mcg subcutane-
ously daily dose is an acceptable
starting dose of PTH 1-84, with possi-
ble increases by 25 mcg up to 100
mcg daily if needed, with concomi-
tant reductions in first calcitriol, and
then calcium supplement doses, with
careful monitoring of serum calcium
and phosphate and urinary calcium
levels thereafter.
COMMENTARY:
Multi-center randomized controlled
trials, like the REPLACE study, are
largely considered the most rigorous
type of study design in clinical re-
search. It is notable that the RE-
PLACE study investigators included
HPTH experts from multiple (33!)
sites/centers, including: Waco, TX,
USA; Pecs, Hungary; Liege, Bel-
gium; San Antonio, TX, USA; New
York, NY, USA; Florence, Italy;
Odense, Denmark; Rochester, MN,
USA; Norwich, UK; Calgary, AB, Cana-
da; Paris, France; Halifax, NS, Canada;
Oakville, ON, Canada; Budapest, Hun-
gary; Philadelphia, PA, USA; Orange,
CA, USA; Boston, MA, USA; Jackson-
ville, FL, USA; Aarhus, Denmark; Van-
couver, WA, USA; Indianapolis, IN,
USA; Lakewood, CA, USA; Liverpool,
UK; San Francisco, CA, USA; Szeged,
Hungary; Chicago, IL, USA; Greenville,
NC, USA; Cincinnati, OH, USA; and
Scottsdale, AZ, USA. The vast majority
of patients were of white race, given the
North American and European geo-
graphic regions. The results of the study
may be less generalizable to people from
other race/ethnicities.
The strict protocol algorithm in weaning
calcium and/or calcitriol in this study
focused on eliminating all active vitamin
D before reducing oral calcium during
titration. This is of clinical importance,
as this titration regimen is a reasonable
one to follow when physicians start pa-
tients on Natparaâ in practice. The defi-
nition of HPTH in this study required
documented PTH concentrations below
the lower limit of the normal range, rec-
orded on at least two occasions within
the previous 12 months. Hence, this
likely explains why Natparaâ is not ap-
proved for those with transient low calci-
um within the first 6-12 months postop-
eratively, since such patients in the im-
mediate postoperative period were not
studied. Future studies would be re-
quired of Natparaâ in that type of situa-
tion, to see if it could help prevent long-
term postoperative HPTH. Besides that,
optimal calcium and/or calcitriol supple-
ment dosing regimens in the immediate
postoperative period also warrants fur-
ther study in terms of prevention of long-
term postoperative HPTH.
The eligibility criteria in this study also
required that patients needed active vita-
min D (calcitriol) and oral calcium
(³1000 mg daily) treatment, had stable
thyroid hormone replacement therapy for
³3 months for those with thyroid disease,
or normal thyroid stimulating hor-
mone (TSH) levels for those without
thyroid disease, normal magnesium
(Mg) and serum 25-hydroxyvitamin
D levels. This is important because in
clinical practice, doctors considering
starting Natparaâ on their patients
should ideally try to ensure stable/
normal TSH, Mg, and vitamin D lev-
els, since those with unstable levels
were not included in the study. How-
ever, it is unclear whether patients
with some fluctuations in their TSH,
Mg, and/or vitamin D levels may still
benefit from Natparaâ as well. It also
leaves open the question of whether
HPTH patients who require LESS
than 1000 mg calcium daily and/or do
not need calcitriol would derive the
same benefit from Natparaâ. Such
patients should discuss their potential
candidacy for Natparaâ carefully with
their treating physician(s), since this
study did not include patients like
them.
I would like to thank all of the tireless
efforts of the HPTH experts, research-
ers, and the study participants from
around the world that made RE-
PLACE and all the other PTH re-
placement studies before it possible.
We are fortunate to finally have this
new drug Natparaâ finally FDA ap-
proved for the treatment of HPTH!
ACKNOWLEDGMENTS:
I would like to thank Dr. Bart Clarke,
Dr. Kelly Liang, and Michele West,
MPH, RN, for their helpful reviews of
this article.
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Come to the 9th International Conference on Hypoparathyroidism –
Register Today! By James Sanders
The 9th International Conference on Hypoparathyroidism will be held on June 4-6, 2015 at the DoubleTree Inn by Hilton
in Minneapolis, Minnesota.
We are so excited! We have planned a powerful program of over 25 lectures and workshops that will not only educate
you about hypoparathyroidism, but will give you tools to deal with the day to day challenges we all face.
Meet new friends, renew old friendships, and meet the very physicians who have worked tirelessly on your behalf for the
past several years.
Knowledge is Power. Register today - https://www.hypopara.org/support-services/conference-info.html
We also have a couple of other things going on in relation to the conference:
State/Country Basket Live Auction – This is raising funds for the Billy Sanders’ Memorial Research Fund. We are
currently raising seed money to help with future research into hypoparathyroidism. Let’s be part of the solution and
make a difference! For more information on the auction – https://www.hypopara.org/article/state-country-basket-
auction.html
2015 Hypopara Awareness T-Shirt – We are currently taking pre-orders for the t-shirt. This year we are offering it in
3 colors. Some people are taking orders from co-workers, family members, and friends. They are then going to submit
the order to us in one batch. Show your support and help raise awareness! See our website (front page) for more
information – www.hypopara.org
[Invitation from the President, James Sanders] - It is difficult for me to believe that the 9th International Conference on
hypoparathyroidism is just a few weeks away. We did not foresee the success of our conferences when we held our first
conference in 2006. Participation has increased with each subsequent conference, and we are getting better with
organizing them each year.
Our Medical Advisors called them “high level scientific symposiums” for patients and caregivers, and they have become
increasingly important to both the speakers and those in attendance. That relationship has helped drive medical
research and clinical trials, and helped to increase the medical community’s knowledge and understanding about
hypoparathyroidism.
We, the patients and caregivers, have benefited as well. Much of the progress in medical research, including the clinical
trials leading up to the Food and Drug Administration’s (FDA) approval of Natpara® in January 2015 to the publication
of important research papers, such as the PARADOX Study, can be traced to our conferences.
Bringing patients and caregivers together in the same room as medical experts has helped promote a symbiotic
relationship that has benefited each of you. Congratulations to each of you who participated in the clinical trials, and
patient studies indeed helped to make a difference in the lives of hypoparathyroidism patients around the world.
I encourage you to make plans to come and to be a part of the conference activities. You will be well fed, both literally
and figuratively, and you can help us make a difference.
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It is almost summer time. Most of us
are thawing out from a pretty severe
winter and the natural tendency, at
least in my house, is to plan a vaca-
tion. When you have a serious ill-
ness like hypoparathyroidism you
have to be extra diligent when you
make your travel plans. I am going to
go through some tips and tricks that
will help you be prepared for any-
thing when you hit the road this sum-
mer.
Traveling by car is my favorite form
of travel. You get to see the beautiful
countryside and you get to spend
hours with your family. My daugh-
ters and I traveled from North Flori-
da to Southern California last sum-
mer and it was fabulous.
The tips I am going to give you are
for the worst-case scenarios. Obvi-
ously I pray that you would not need
any of these tips but you will be
ready just in case.
First, and probably the most im-
portant and easiest thing to do, is to
wear a medical alert bracelet or neck-
lace. I just hit the decade mark with
HPTH and I have worn a medical
alert bracelet for 9 and a half of those
10 years. My husband was the one to
insist on me getting one and if he
ever saw me without it on he would
go ballistic. He would tell me, “Our
kids are little. What if you bottomed
out in the mall or got in a car crash?
You could die before they even fig-
ured out you have HPTH.” Even if it
is a little overdramatic the sentiment
is true. If I can’t speak that bracelet
can speak for me and every medical
professional knows what that jewelry
is for.
Second tip is ICE your phone. ICE
means In Case of Emergency. This is
a contact on your phone that has
listed the people that medical profes-
sionals should call in case of emer-
gency. If you lock your phone with a
pass code then of course this won’t
work but it is a good thing to have on
your phone just in case. Maybe tell
someone else in your party the pass
code for your phone for emergency
situations. This is simple and it is
free. There is actually an app for
your phone called ICE that has a
similar function but it links your lo-
cation up using the GPS in your
phone and some people aren’t keen
on having their phones being tracked.
Third tip for road trips is keep a
thumb drive on your key ring with a
copy of all your important docu-
ments including birth certificates,
drivers license, medical and car in-
surance and any relevant medical
information that an ER doctor may
need in an emergency. Items get lost
or stolen but having all those im-
portant documents on your key ring
will ensure you are ready for any-
thing.
One of the most popular destinations
for families during the summer is the
theme park area in Orlando, Florida.
Living just a few hours away in
North Florida they are the go to va-
cation spot for our family. These
theme parks are awesome, but one
thing you are going to have to do a
LOT of is walking. They estimate
that while inside the park people
walk 8 – 10 miles. When you have a
condition like HPTH walking in the
heat can affect your calcium levels
pretty quickly. I found a solution to
this issue, an Electronic Convenience
Vehicle or ECV. They are the 3 or 4-
wheeled scooters that you drive
throughout the park. You can rent
them at the main gate or you can rent
them at a third party service and they
will deliver it to your hotel and you
can ride the buses to the parks. It can
be a little embarrassing at first but at
the end of the day when you are still
feeling good and can keep up with
your kids when they want to go to the
pool, it is so worth it.
While you are at the theme parks
don’t forget, if you have a handicap
parking permit many of the hotels
will valet park your car for free and
your parking in the Magic Kingdom
is free; small ways to make your va-
cation all the more magical.
Another very popular travel option
today is to take a cruise. I have never
taken a cruise before so I talked with
my travel agent Caren Daniel. She
told me the main thing to remember
when booking a cruise with a serious
illness is to communicate with the
cruise lines. They need to know what
health issues you are facing, what
medications you are taking and if
they should have emergency supplies
on hand like IV calcium. For their
own liability the cruise ship wants to
be ready for any issues that may arise
no matter how unlikely. They are
likely to keep medicines to help
someone who is having a heart attack
or needs IV fluids, but something
like IV calcium is not something they
would prepare for.
Another thing Caren recommends is
purchasing trip insurance and she
recommends getting it privately or
through your agent for cheaper and
more complete coverage than what
the cruise lines would offer. Not only
does trip insurance refund your trip
expense if something happens but
also it covers you health wise while
you are out of the country.
Tips To Make Traveling with Hypoparathyroidism More Enjoyable
and Safer by Cindy Schriver
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State & Country Basket Auction
Here’s a little friendly geographic competition of States and Countries to help support the Billy Sanders Memorial Research Fund. We invite each you to help fill your State (or Country’s) basket for the Live Auction to be held during the
Banquet on Friday night. We ask you provide something from your home State/Country, or from wherever you call home. Make your Hometown proud, celebrate your region’s gifts, and help raise needed money for Hypopara Research! No donation is too big or too small. All proceeds will go to support the newly-named Billy Sanders Memorial Research Fund, named in honor of Billy, an older brother of James Sanders, founder and president, who died as a baby as a result hypoparathyroid complications. If you have any questions or would like to send your donations early, please contact Dana Crumpton at [email protected]. See you at the conference!
NORD Regional Meetings on Hypoparathyroidism
By Lauren Rosato, NORD
The National Organization for Rare Disorders, NORD, is sponsoring another series of one-day regional
meetings for hypoparathyroidism for the benefit of hypoparathyroid patients and caregivers throughout the
United States. The schedule for the meetings and their locations are:
May 29, 2015 - Providence, RI
June 13, 2015 - Phoenix, AZ
June 19, 2015 - Pittsburgh, PA
July 11, 2015 - Tarrytown, NY (New York City Metro Area)
July 18, 2015 - Washington, D.C.
For more information see their website at http://www.rarediseases.org/patients-and-families/patient-meetings
Another recommendation is to have a
current passport. Right now most of
the cruise lines do not require a pass-
port to travel with them, but if some-
thing happens to you while abroad
your travel insurance will pay for you
to be flown back to the states to be
treated. If you do not have a valid
passport you will have a tough time
getting back into the country.
Suffering from a chronic illness like Hy-
poparathyroidism can be limiting in a lot
of ways but getting out and enjoying
traveling with your family does not need
to be one of those things that suffer.
With a little advance planning you can
sit back and enjoy your vacation with the
security that even if the worst-case sce-
nario happens you will be ready.
Special thanks to travel agent Caren
Daniel:
www.cruiseshipcenters.com/en-
US/carendaniel/home
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IDAHO FALLS - More than 20
years of hard work and dedication by
an Idaho Falls-based international
organization led to the Food and
Drug Administration approving the
first drug created to treat hypopara-
thyroidism.
Natpara is an injectable synthetic
hormone replacement taken twice a
day. It is being manufactured by
NPS Pharmaceuticals and will be
available to patients later this month
or early April. No price has been set.
James Sanders, president of the Hy-
poparathyroidism Association, has
been trying to raise awareness in the
medical community about the condi-
tion. Hypoparathyroidism is a rare
disease that affects about one in
5,000 people, including Sanders and
his five sons.
The parathyroid glands, a set of
glands the size of a grain of rice, are
nestled against the thyroid gland.
They produce a hormone that tells
the body when and how to use calci-
um. Aside from helping develop
strong bones, calcium also is a criti-
cal electrolyte supporting muscle and
brain function.
Without the hormone produced by
the parathyroid glands, the body can-
not use calcium properly, which
leads to a host of symptoms. Those
symptoms include muscle cramps or
spasms, confused or cloudy thinking
and depression. Some of the more
serious cases include seizures, heart
attacks and death.
“The parathyroid is the last in the
endocrine system to get drug re-
placement therapy,” said Julie Hun-
saker, vice president of the Hypopar-
athyroidism Association, of Idaho
Falls. “Hypoparathyroidism is so
often misdiagnosed as hypocalcemia
(low blood calcium), because that’s
very much what it is.”
When someone with the disease
“crashes” from low blood calcium,
the symptoms often resemble drug or
alcohol overdose and the true cause
can be missed by emergency room
doctors. The disease is so rare, most
doctors never see a single case, let
alone do any serious research on
how it works or how to treat it, Hun-
saker said
“My youngest son went to the ER
last week with seizure after seizure,”
Sanders said. “I’m in stage three kid-
ney failure.”
Hypoparathyroidism usually is
caused by damage to the parathyroid
glands, most often as a result of thy-
roid surgery to treat cancer and other
thyroid issues. Sanders and his fami-
ly are even more rare because it ap-
pears to be genetic, although medical
experts are uncertain of the exact
cause. “I think we’re in the infancy
of understanding this disease in the
medical community,” said Dr. Barry
Bennett of Southeast Idaho Family
Practice in Idaho Falls.
Bennett is a general practitioner, but
his experience treating Sanders and
his family has made him a medical
adviser and consultant on the subject
of hypoparathyroidism. He has spo-
ken at several of the Hypoparathy-
roidism Association’s international
conferences about the disease and
will attend the ninth annual confer-
ence in Minneapolis this summer.
“Now that there is actually a drug
available, I think … there will be
more awareness,” Bennett said.
Sanders originally created the Hypo-
parathyroidism Association in 1994
as a support group for people afflict-
ed with the disease. But as the organ-
ization gained thousands of members
throughout the world, he saw an op-
portunity to use it as a resource for
doctors to conduct research.
“By bringing the doctors and patients
together, (the doctors) were able to
see the suffering,” said Lorraine Bol-
ton, secretary of the Hypoparathy-
roidism Association, of Idaho Falls.
“I think it has brought to light what
(hypoparathyroidism) actually is.”
Before the FDA approved Natpara
the patients’ only option was to take
large amounts of calcium supple-
ments. But too much calcium causes
other health problems, such as kid-
ney stones and even kidney damage.
“I’m relieved,” Sanders said. “All the
work we started 21 years ago is com-
ing to a head. We did something
good. It’s a great sense of accom-
plishment.”
Hope for a Healthy Future By Karen Sarita Ingram, Post Register
First published Mar 11, 2015; reprinted with permission
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By: Mary Rakos
For as long as I can remember, I have
enjoyed expressing my creativity
through various crafts. Through the
years, I have learned crochet, knit-
ting, wreath and jewelry making, as
well as, the art of stained glass.
In 2012, with the encouragement and
support of my family, I opened ‘Lil
Pumpkin Crafts
www.etsy.com/shop/lilpumpkincrafts
an online store featuring my works.
In 2013, I underwent thyroid surgery.
During the surgery, my parathyroid
glands were damaged and I was later
diagnosed with Post-Surgical Hypo-
parathyroidism.
For a time, ‘Lil Pumpkin Crafts was
put on hold. My main focus was to
learn how to manage my condition
and obtain some stability with my
health. The first year was especially
difficult. However, through educat-
ing myself about HPTH, careful
monitoring of my symptoms, and
being vigilant in obtaining lab work,
I have been able to find a balance that
works for me.
In 2014, I reopened my store and
have been busier than ever. I feel
blessed to be able to continue to do
what I love. Creating something with
my own two hands has always been
able to lift my spirits and brighten my
days.
—————————————
By: Shaunna Coit
I recently celebrated my 4-year Hy-
popara Anniversary. I had a Total
Thyroidectomy on April 13, 2011.
My Hypoparathyroidism was a result
of the surgery. The first 18 months
were a nightmare. The symptoms of
cramps, full body tetany, fatigue,
brain fog, and crippling anxiety con-
sumed my life. My days involved
doctor visits, infusions, trips to the
Emergency Room, labs, tests, re-
search, and very few answers. My
boys were 1 and 3 years old at the
time. I had gone from being an active
mom to needing help just to function
on a daily basis. I did not have any
hobbies or venture outside of my
home very often. I felt like I had lost
myself to this disease.
Over time, I was able to gain a lot of
valuable information and education
from other Hypopara patients via In-
ternet support groups. With their sup-
port and advice, I was able to learn
how to improve, manage, and func-
tion in spite of my symptoms. I slow-
ly began to get more involved with
my kids activities and to return to my
old hobbies.
I quickly found that my hobbies
helped me to forget my daily symp-
toms. One of my hobbies is building
and refinishing furniture. I really en-
joy creating simple rustic pieces as
well as refinishing old pieces that are
outdated, broken, or cast off by oth-
ers. Last year I started a small busi-
ness and I have really enjoyed shar-
ing my creations with others.
I spent my first couple years fighting
against the Hypoparathyroidism and
trying to eliminate my symptoms so
that I could have my life back. I had
to change my perspective a bit to re-
alize that I am blessed to be able to
enjoy my life while I manage this
disease.
My hope for every Hypoparathyroid-
ism patient is that they will come to a
point where they feel like they are
able to triumph over their symptoms
by participating in whatever brings
them joy and peace.
———————————————
By Kathie Cote
I have grown up in my family break-
fast restaurant business. Polly's Pan-
cake Parlor was started in 1938 by
my grand parents, Wilfred "Sugar
Bill" and Pauline Dexter, as a way to
highlight the various maple products
HypoPARA Reflections – Living With Hypoparathyroidism
Collected by Nancy Watson
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that they produced here on their farm.
They took an old wood/carriage shed
and made it a quaint tearoom and ca-
tered to many of the visitors in the
seven grand hotels that are in the sce-
nic Sugar Hill area here in the White
Mountains of New Hampshire.
Over the years our business has
grown by leaps and bounds and re-
ceived lots of national attention. My
husband Dennis and I joined the busi-
ness in 1982 full time and took over
ownership in 2003. The old building
was never built to sustain the pound-
ing it takes from almost 60,000 visi-
tors each season. Nor was it built to
any safe standards and ADA compli-
ancy. For the past 10 years we have
been racking our brains as to how we
could expand without changing a
thing. Every idea we came up with
gave us roadblocks. Two years ago
we finally hired an architectural firm
and had them draw up a set of plans
for a new building built to replicate
the older building.
Now, here is my health back-story. I
have had thyroid nodules for years.
My gynecologist always mentioned
my goiter every year, but it never
bothered me. I would get ultrasounds
but my levels never warranted further
testing. Finally I had a NP that sug-
gested I get another ultrasound. Re-
sults came back showing a new nod-
ule and even though the radiologist
said it was nothing, my NP referred
me to an Endo. I had an FNA and an ul-
trasound and I was sent home with
the assurance that it was most likely
nothing.
Three days later we were sitting in the
architect firm reviewing the new plans
when I got the call from my Endo that
the nodule was positive for papillary thy-
roid cancer. We finished the meeting in a
foggy haze, took the plans with us and
left. The next two months were a quick
succession of doctor meetings and sur-
gery. My surgery was at a teaching hos-
pital and it was same day surgery. I was
told by the surgeon about the 1-2%
chance of temporary or permanent dam-
age to my paras. I was not told that most
likely the very experienced surgeon
would hardly be in the room during my
surgery. My calcium was never checked
before my release later that afternoon. I
was told to chug Tums for a week.
The surgeon's follow up call was taken
by my husband as I was out of the house
so I never talked to him directly and he
told my husband I could stop the Tums.
My follow up with my Endo was 12
weeks later. By this time I was a walking
and talking zombie. Looking back I am
amazed that I was functioning as well as
I did. When I finally saw him I men-
tioned my brain fog, emotional issues,
numbness in hands, feet, and lips. He
said, "Is this something you'd like to
pursue?" Duh! When the results came
back my calcium was at 6.2. He put
me on Calcitriol and slowly I im-
proved. It took me a solid 5-6 months
to start to regain some type of normal-
cy, a new normal of course. I have
been lucky to never go into tetany.
All during this recovery we muddled
along with our plans and running the
business. Finally 8 months later we
took a hard look at our plans. Some-
thing had not felt right and the new
plans did not feel nor look like Pol-
ly's. We dumped those plans and the
architect firm and went with a local
construction firm, basically building a
larger version of our old building.
I often wonder what would have hap-
pened if I hadn't gotten that diagnosis
in the middle of the first planning
stages. As stressful as the cancer diag-
nosis was, along with the permanent
hypopara diagnosis it did give us
pause to think. Should we move for-
ward? What if the cancer comes
back? How will I be able to function
with limited para activity? I have
always been a stoic person that just
"keeps trucking". I decided to not let
this health setback limit me and our
plans have moved forward. We de-
molished the old building last October
after we had closed for the season.
Construction started immediately and
continued straight through one of the
coldest winters on record in our area.
We are now 4 weeks from opening
The original Polly’s Pancake
Parlor
The ‘new’ Polly’s Pancake Parlor
Dennis & Kathie Cote
receiving James Beard
Foundation Awards
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Let’s Change How We Think About Living With
Hypoparathyroidism – A Lesson in Love By Ari Campbell
I was diagnosed with thyroid cancer just over 10 years ago in March of 2005. Because of two surgeries and RAI, I
was subsequently diagnosed with post-surgical hypoparathyroidism – a diagnosis that has been truly life altering for
me. Ove r the last decade, I have known pain, both physical and emotional. I have lost my marriage and myself. I have
found myself and remarried. I have fought against the desire for revenge and learned forgiveness. I have fought to find
my way out of black clouds that covered my thoughts, and I have found true joy. Hypoparathyroidism, as I’m sure
many chronic illnesses do to people, has made me take a deeper look at who I am and what I am able to do. We spend
a lot of time talking about our calcium levels, new treatment options, and how we are feeling, but not a lot of time
about how chronic illness effect our lives. I consider myself among the lucky or blessed.
I always knew that if one hadn’t experienced life with the symptoms we deal with that they couldn’t actually
understand how I felt. People don’t just “get it”. I think on some level, I wanted to believe that those who loved me
did understand though, and this wasn’t always true. Living with someone with a chronic illness is hard. It is hard to
see someone you love in pain, it is hard to not be able to do anything to help, and we can be hard to live with
sometimes. We can’t always keep plans that we have made (if we make plans at all), our moods may not always be
level because, hey – our calcium levels may not always be stable, and don’t forget the medical bills from all of those
medical appointment and blood draws. On another note, we do have to schedule our medications and medication
times pretty precisely so we can minimize our symptoms. Therefore, we are able to keep a schedule – it’s not that we
aren’t able to schedule, we just aren’t able to schedule anything, or remember things like we used to be able to. Some
of us even keep a copy of Christine Miserandino’s Spoon Theory on hand for everyone in our lives to read in hopes
that it may help them understand just a little bit what it is like for us on a daily basis. Sometimes all of this can reduce
us to a blubbering heap of tears on the laundry room floor. No, we aren’t always fun to live with. Even we don’t like
to live with ourselves sometimes.
We are lovable though, and we shouldn’t feel guilty for how hypoparathyroidism has affected us or our lives. What I
day!
To say there has been stress is an un-
derstatement. Throughout this I have
learned how important it is to take
time outs, walks, trips, read and at-
tend concerts. Life can be short, so
“carpe diem” is my motto. Did I men-
tion that also in the past year my el-
derly father was diagnosed with
esophageal cancer and passed away in
November? My mother has had Alz-
heimer's and we finally had to move
her into a skilled nursing facility.
Sometimes I am amazed that I haven't
crumbled through out this whole past
two years. I am very grateful that I
seem relatively stable on low doses of
Calcitriol and calcium. I am also very
grateful for the HypoPARAthyroidism
Association and various support
groups, they have been so very helpful.
HypoPARA Reflections is a patient
section to showcase business, creative
and/ or athletic outlets that many of
us use to show what having hypopar-
athyroidism means to us, or to show
what we have accomplished despite
having our illness. If you would like
to show others your accomplishments
send them to:
We hope to see many of you
“reflecting” on your accomplish-
ments and sharing them in future is-
sues of The HypoPARA-
Post.
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found in my life with hypoparathyroidism is that no matter how well controlled my symptoms are, I am still not the same
woman I was before. I am glad for this too! I do have to pay attention to how much energy I am going to exert every
single day (even on Natpara) so I can be sure I have the energy for the next day. I haven’t been able to do everything I
wanted to do in the same way I may have done it before, but I am still doing everything I ever wanted to do. I work full
time, I have gone back to school full time, I have a family and I have learned to say I cannot do it all on my own.
Asking for help was the hardest thing for me to learn to do. I really struggled with accepting my bad days initially.
Then I accepted my bad days, let them define me and I became “sick”. I wanted my invisible illness to be seen. I think
we do that a lot without even realizing we are doing this. I missed a lot of work. My pain got worse, not just my body
and bone pain, but also my migraines. I was on pain medications. Although I was strictly compliant with my
medications and calcium, I was symptomatic. My calcium levels did fluctuate and tend to run a little low so I had to
have medication adjustments. Understand, none of this was intentional, and it wasn’t until I decided I was sick of being
sick and took some time to look inward that I even realized this was happening. I am also not saying that any of this is
in our heads – that would make me as bad as the doctors many of us have encountered who have made us feel small and
who ignored so many of our symptoms for years! (Thank you to all of the wonderful ones who are out there!) What I am
saying is that our outlook on life can make a big difference in how we feel on a regular basis. I am still just as
symptomatic as I ever was. I twitch daily. I tingle daily. I still get migraines, though with medications adjustments
these are better. I have been off all pain medications for three years. I believe my worsening pain (as does my doctor)
was rebound pain from the medications. Changing the way I was able to see hypoparathyroidism in my life did change
how I felt to some degree.
Finding a balance is important, and was important for me. This is what we all really want – to have our blood levels be
balanced, and to have some balance in our lives. I am not going to pretend my life is perfect, but I am happy about
where I am today. This moment is where I am. I cannot go back and change what has happened and worrying about
tomorrow won’t make this moment in my life any better.
I don’t suggest being naïve about our illness. Stay vigilant, but don’t let it consume you. I participate in clinical trials. I
see my doctor. I talk to other people with this diagnosis. What I don’t do any more is let it define me or control my life
any more than I let anything else define me or control my life. When we change how we think, we can change our lives.
I believe this.
I found my voice in my illness, in my divorce and in my new life. I am my own advocate and I know how to be loved for
who I am. Hypoparathyroidism does not define me anymore. It is something I deal with. I have a diagnosis of
hypertension. I manage it. I have I have learned so much about myself over the last 10 years - good and bad. All of what
I have learned about me, I have learned to love. It has been a lesson in love. Hypoparathyroidism has not been a curse to
me. It has been a blessing in disguise. Not one I would have chosen for myself, but one I have learned to live with.
Everyone has challenges in life; this is one of mine.
Lakeland Man Wields Art to Combat Condition Affecting His Brain By Gary White THE LEDGER
Published: Sunday, October 26, 2014 at 9:14 a.m. Last Modified: Sunday, October 26, 2014 at 9:14 a.m.
Reprinted with permission
LAKELAND | The walls of Davis Yates' home abound with framed images of his "serendipitous art" -- the colorful
results of his computer manipulations of photos and paintings.
A black-and-white print on his dining room table provided a contrast: a scan of Yates' brain. Two blobs of white stood
out against a black background, indicating calcifications the size of marbles.
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The image reflects a rare autoimmune disorder, pseudohypoparathyroidism, that generally results in dementia before a
patient reaches Yates' age of 66.
Yates, a retired dentist, is convinced his energetic pursuit of creative endeavors -- writing children's stories, making
music and creating computer-generated art -- helps explain why he remains mentally sharp despite the disorder.
"In order to work around those blocked synapses -- and they're more easily blocked as you get older -- I have to really
work at it," he said, adding that he wakes each morning with the thought: "What can I create today?"
Yates, a married father of two grown sons, has written manuscripts for a novel and at least 10 books for children and
young adults.
He recently self-published a kids' picture book, "Leaf's Final Journey."
Yates said he endured physical problems throughout his childhood, including numbness, stiffness and muscle spasms
in his hands, but his parents assured him they were all just growing pains.
By the time he was in college, Yates assumed he had some form of epilepsy.
While a student at the University of South Florida, Yates got a preliminary diagnosis of hypoparathyroidism, an
endocrine disorder that disrupts production of a hormone that regulates levels of calcium, phosphorus and vitamin D in
blood and bones. Yates said doctors later decided he has pseudohypoparathyroidism, a variant of the main disorder, in
which receptors fail to recognize the hormone, resulting in low calcium production.
STUDY SUBJECT
When Yates was a dental student at the Medical College of Virginia, the head of the school's endocrinology department
received a grant to study him. Dr. Hershel Estep told Yates he was among just 10 people worldwide with his set of
Davis Yates, above, frames one of his pieces Tuesday in his Lakeland home.
SCOTT WHEELER | THE LEDGER
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symptoms.
The doctor said Yates could reduce the risks by carefully managing his calcium and by thoroughly exercising his mental
faculties.
"With a couple of sentences, he changed my life," Yates said. "I'd already been set free because I'd been dragging along
this ball and chain until I was finally diagnosed.
"When they cut free that ball and chain, I had all kinds of energy."
Yates began taking massive doses of vitamin D, helping to raise his calcium level.
Dr. Khanh T. Pham, an endocrinologist at Watson Clinic in Lakeland, has overseen Yates' treatment for two years. She
said calcification in the brain's basal ganglia, areas of the brain associated with voluntary movements and mental
processes, is common with the condition and creates risks of seizures, Parkinson's disease and dementia.
Because the condition is so rare, Pham said, it's impossible to compare Yates to anyone else she has seen. In general
terms, though, she said studies have shown that engaging in mental activities does improve cognitive function.
After operating a practice for several years in Virginia, Yates returned to Lakeland to buy out a dental office in 1982.
His wife of nearly 40 years, Rosemary, helped manage the practice for most of that period.
Rosemary Yates said that she doesn't recall how she learned about her husband's condition.
"The truth is, he's always played it down," she said. "He doesn't focus on it. It doesn't define him. He almost made light
of it."
One symptom of hypoparathyroidism, a tremor in his right hand, forced Yates to retire from dentistry in 2003. The
following year, cluster headaches and stroke-like symptoms prompted a CT scan, which first revealed his brain
calcifications in the basal ganglia.
Since that point, his creative output has accelerated. His annual tradition of crafting a whimsical Christmas story for his
family blossomed into a regular pursuit.
Yates has one complete 250-page manuscript, "The God Message," about a young woman whose creation of a religious
drama brings opposition from a megachurch.
He has written two sets of chapter books geared toward young readers.
Animal characters figure into much of his writing, such as an opossum whose penchant for frenetic motion draws
admonishment from his stolid mother.
SPREADING OPTIMISM
Since discovering the possibilities of manipulating images with computer programs 2 1/2 years ago, Yates has
generated enough work to fill several computer hard drives.
Pursuing another of his skills, woodworking, he built a detached studio in the backyard as a retreat for recording music,
creating art and writing stories.
Yates said he didn't seek attention for most of his creative endeavors until recently, when he decided that he could use
his writings, in particular, as a way to spread his message that cognitive exercise is powerful preventive medicine.
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1. Surgeons and patients disagree
on the potential consequences
from ...
www.ncbi.nlm.nih.gov/pubmed/2432
5999
by NL Cho - 2014 - Cited by 1 -
Related articles
May 1, 2014 - We also elicited the
perceptions of endocr ine surgeons
regarding the ... controls underesti-
mated the negative impact of hy-
poparathyroidism on ...
2. Brigham and Women's Hospital
- Department of Surgery
www.researchgate.net/institution/Bri
gham_and...of.../publications?...
Conclusions: The impact of postop-
erative hypoparathyroidism on pa-
tient QOL is ... underestimated by
surgeons and subjects receiving sur-
gical consultation. ... at District Hos-
pitals in Developing Countries and
Perceived Bar r ier s to Quality ...
3. Jacob Moalem - Publications -
ResearchGate
www.researchgate.net/profile/Jacob
_Moalem/publications
Conclusions: The impact of postop-
erative hypoparathyroidism on pa-
tient QOL is ... underestimated by
surgeons and subjects receiving sur-
gical consultation. ..... to spend more
time on activities perceived to have
higher educational value.
4. first uk patient information leaf-
let - out now! - Hypopara UK
hypo-
para.org.uk/Files/File/newsletter04r.
perceptions of HPTH patients with
those of surgeons and pre-op pa-
tients. Dr Dan Ruan recently ... sur-
gery consistently underestimate the
severity and impact of Hypoparathy-
roidism on patient quality of life.‟
This matches our own findings
and ...
5. Full Text - European Journal of
Endocrinology
www.eje-
online.org/content/165/2/345.full
by K Lima - 2011 - Cited by 10 -
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Aug 1, 2011 - Hypoparathyroidism
may present at any age, also in
adults, and warrants regular .....
Thus, the occurrence of neonatal hy-
pocalcemia may be underestimated.
.... that could be perceived as preju-
dicing the impartiality of the research
reported. ..... The impact of an early
truncating founder ATM mutation
on …
6. Hypoparathyroidism and auto-
immunity in the 22q11.2 deletion
...
www.eje-
online.org/content/165/2/345.full.pdf
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hypoparathyroidism including sev-
en (54%) of those above age 15
years. A history of neonatal ..... mia
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Funding .... The impact of an early ...
Links to Articles on Hypoparathyroidism
Yates knows creativity is not a panacea for all medical problems. He acknowledges having "foggy days," when his
mental faculties lack sharpness and his mood sags.
A few years ago, Yates was invited to speak at an annual conference of the Hypoparathyroidism Association for patients and
specialists in Maryland.
He said the gathering drew about 25 adults and 10 children with the condition.
Recognizing the fear the young patients must have, Yates used himself as an example that a relatively normal life is
possible through following a medical regimen and embracing creativity. He said the meetings were disrupted at least
once a day when a patient had a seizure and needed medical attention.
"That's what these kids were seeing, and these were half the time people not even in their 50s," Yates said. "My message
to the kids was, 'It doesn't have to be that way.' "
_______________________________________________________________________________________________
Gary White can be reached at [email protected] or 863-802-7518. He blogs about tourism at http://tourism.blogs.theledger.com. Follow on Twitter @garywhite13.
P.O. Box 2258
Idaho Falls, ID 83406
Phone: (208) 524-3857 or (866) 213-0394 (toll free)
Website: www.hypopara.org
E-Mail: [email protected]
©2015 The Hypoparathyroidism Association, Inc.
James Sanders
To grow,
To cope,
To learn,
To hope –
towards a cure.
The mission on the
HypoPARAthyroidism
Association is to improve
the lives of those touched
by hypoparathyroidism
through awareness and
support.