and new treatments for hair pulling and skin picking disorders · pdf file hair pulling and...

A TLC Research Initiative CREATING NEW HOPE and New Treatments for Hair Pulling and Skin Picking Disorders

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RE: WE NEED A NEW APPROACH

TO BFRB RESEA RCH

Dear friends,

The best research suggests that 3% o

r more of the popu lation lives with h

air pulling or skin

picking disorders, also known as BF

RBs (Body-Focuse d Repetitive Behav

iors). That’s more

than 10 million pe ople in North Am

erica alone. Today , there are very few

treatment options

available for them , and typical succe

ss rates are only 10 -20%.

Drastic cuts in fed eral funding make

it nearly impossib le to secure public

money for BFRB

research, leading t o chronically unde

rfunded research e fforts that have fai

led to produce

new treatment opt ions. As a result, w

e still lack foundat ional scientific kn

owledge about the

genetic and biolog ical mechanisms f

or hair pulling and skin picking disor

ders.

With your help, w e have an opportu

nity to transform the entire landsc

ape of treatment

possibilities for h air pulling and sk

in picking.

Let us share with y ou TLC’s vision fo

r the BFRB Precisi on Medicine Initia

tive.

Sincerely,

Jon E. Grant

Jon E. Grant, JD , MD, MPH

Chair, Scientific Advisory Board

The TLC Founda tion for Body Fo

cused Repetitiv e Behaviors

Professor of Psy chiatry and Beh

avioral Neurosc ience

University of Ch icago

“I started picking when I was 5 or 6.”

Jon E. Grant, J.D., M.D., M.P.H., Advisory Chair Professor of Psychiatry and Behavioral Neuroscience University of Chicago, IL

Nancy J. Keuthen, Ph.D., Advisory Vice Chair Psychiatric Neuroscience Program Massachusetts General Hospital Harvard Medical School Boston, MA

Fred Penzel, Ph.D., Advisory Secretary Director, Western Suffolk Psychological Services Huntington, NY

Darin Dougherty, M.D., MSc. Director, Neurotherapeutics Division, Massachusetts General Hospital Harvard Medical School Boston, MA

Christopher A. Flessner, Ph.D. Assistant Professor, Dept. of Psychology Kent State University, OH

Martin Franklin, Ph.D. Director, COTTAGe University of Pennsylvania School of Medicine Philadelphia, PA

Joseph Garner, Ph.D. Dept. of Comparative Medicine Stanford University Veterinary Service Center Stanford, CA

Ruth Golomb, M.Ed., LCPC Behavior Therapy Center of Greater Washington, Silver Spring, MD

David Haaga, Ph.D. Chair, Psychology Department American University, Washington, D.C.

Charles S. Mansueto, Ph.D. Director, Behavior Therapy Center of Greater Washington Silver Spring, MD

Suzanne Mouton-Odum, Ph.D. Private Practice Houston, TX

Carol Novak, M.D. Department of Psychiatry HealthPartners Behavioral Health Minneapolis, MN

John Piacentini, Ph.D., ABPP Director, UCLA Child OCD, Anxiety and Tic Disorders Program UCLA Semel Institute for Neuroscience and Human Behavior Los Angeles, CA

Jeremiah M. Scharf, M.D., Ph.D. Dept. of Neurology Harvard Medical School Boston, MA

Dan Stein, M.D., Ph.D. Dept. of Psychiatry and Mental Health University of Capetown South Africa

John Walkup, M.D. Division of Child & Adolescent Psychiatry New York-Presbyterian Hospital Weill Cornell Medical College New York, NY

Douglas Woods, Ph.D. Dean of the Graduate School, Professor of Psychology, Marquette University, Milwaukee, WI

Harry Wright, M.D., M.B.A Neuropsychiatry & Behavioral Science Univ. of South Carolina School of Medicine Columbia, SC

SCIENTIFIC ADVISORY BOARD (SAB)

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Don’t you think it’s time we created better solutions for ourselves and our children?

“I’ve been pulling my hair out for over 30 years.”

“My parents took me to doctors, therapists and treatment programs all over the state.”

“I’m tired of suffering.”

“My doctor had never heard of trichotillomania.”

“I have tried absolutely everything.”

“We’ve spent thousands on counseling and the behavior always returns.”

Charles S. Mansueto, Ph.D. Director, Behavior Therapy Center of Greater Washington Silver Spring, MD

Suzanne Mouton-Odum, Ph.D. Private Practice Houston, TX

Carol Novak, M.D. Department of Psychiatry HealthPartners Behavioral Health Minneapolis, MN

John Piacentini, Ph.D., ABPP Director, UCLA Child OCD, Anxiety and Tic Disorders Program UCLA Semel Institute for Neuroscience and Human Behavior Los Angeles, CA

Jeremiah M. Scharf, M.D., Ph.D. Dept. of Neurology Harvard Medical School Boston, MA

Dan Stein, M.D., Ph.D. Dept. of Psychiatry and Mental Health University of Capetown South Africa

John Walkup, M.D. Division of Child & Adolescent Psychiatry New York-Presbyterian Hospital Weill Cornell Medical College New York, NY

Douglas Woods, Ph.D. Dean of the Graduate School, Professor of Psychology, Marquette University, Milwaukee, WI

Harry Wright, M.D., M.B.A Neuropsychiatry & Behavioral Science Univ. of South Carolina School of Medicine Columbia, SC

Supporters and sufferers gather for a group photo at a recent TLC event.

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Two, unique girls ...

cope wit h and ma

nage this disorder

on her o wn. I’m

proud of

how well she has

done, bu t I know

she stru ggles dai

ly.

As a mot her, I jus

t want h er to be

able to liv e her life

--to take a

shower o r look in

the mirro r or wea

r a short -sleeve s

hirt with out

fear tha t she’ll pi

ck her sk in; to hav

e friends hips and

dreams a nd

adventur es withou

t having to spend

hours a day man

aging her

skin. If I could ha

ve one w ish in the

world, it would be

to see m y

daughter free of

this disor der once

and for all.

BANDAGES WON’T CU

RE MY

DAUGHTER ’S SKIN PI

CKING

My daughte r Molly star

ted picking her skin wh

en she was five

years old. B y first grad

e, she’d hav e forty to f

ifty open so res

on her body at a time.

People wou ld stare an

d ask her if

she had ch icken pox o

r poison ivy . Her cloth

es were alw ays

covered wit h blood.

For years, I tried to pr

event her f rom picking

any way I

could. At ni ght I put s

ocks over h er hands, s

ecuring the m

in place wit h tape. Eac

h morning I would clea

n her woun ds,

cover them with banda

ges, and th en place tu

bular gauze

over her ar ms and legs

, taping the openings t

o her skin. I

tried rewar ding her wi

th money f or making i

t through a day

without pic king. I purc

hased band ages online

by the cas e.

Molly start ed seeing p

sychiatrists and therap

ists at age six.

I’ve taken her all over

the countr y and spent

thousands of

dollars seek ing an effe

ctive treat ment. At a

special clin ic in

Hartford w e were told

, “We can t reat her if

you want, b ut

there’s alm ost a 100 p

ercent rela pse rate.”

We left fe eling

discouraged and defea

ted. We’ve tried variou

s medicatio ns

and supplem ents includi

ng Prozac, Inositol, an

d NAC. Non e of

these treat ments has

been able t o cure her

skin picking .

Molly now h as permane

nt scarring on her fac

e and back .

She’s had t wo bouts o

f cellulitis, a dangerous

skin infect ion.

Today, as a young wom

an in colleg e, she has

had to lear n to

Molly’s Story

Lily and her mother.

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Two, unique girls ... ... the SAME STORY.COMMON ISSUES

FOR MILLIONS OF PEOPLE WITH BFRBs

■ THEIR BEHAVIOR BEGINS WHEN YOUNG

■ THEY ENDURE YEARS OF SUFFERING

■ THEY EXHAUST ALL TREATMENT POSSIBILITIES and are forced to manage their lives around daily picking and pulling

wig. I stil l spend one or two hours every day pulling. My

mom says that my grandfather used to pull his hair too,

so she’s worried about trichotillomania getting passed on

in our family.

I’ve tried everything possible to stop pull ing, but nothing

seems to help: medications, supplements, therapists,

acupuncture, reiki, and every f iddle tool there is. Every

time I try a new medicine or treatment, I secretly

get super-excited and think, “Maybe this wil l be the

ONE and I won’t have to pull anymore.” Then I’m more

discouraged than ever when it doesn’t help. I’ve pretty

much given up on medicines now, because it’s so

disappointing to try another one, get my hopes up, and

then have it not work again. I’m really nervous about starting high school this Fall--

being at a new school, where I won’t know anyone, and

getting all the qu