Experts by Experience 2016: A compilation of patient stories

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A compilation of patient stories
BY EXPERIENCE
Experts
2016
Published by Stanford Medicine

www.inspire.com | Experts by Experience
Table of Contents
Introduction: Brian Loew
Foreword: Connectivity Brings Knowledge and Hope
Letting Go of My Secret About Charcot-Marie-Tooth,“The biggest disease no one has heard of”
My Dance with Dystonia
Welcome to Your New Country: A heart patient on her “travels” with heart disease
Navigating a Rare Genetic Disorder with a Positive Attitude
Living with the Uncertainty of NF
On Growing Up with Chronic Illness: “I’ve never felt like I had ownership over my body”
“What Might They Be Interested in Learning from Me?” Tips on medical advocacy
Surviving a Betrayal of the Heart
Laughing Through the Pain: A comedy writer’s experience with chronic illness
Take it from Me: To improve compliance with psychiatric meds, we must educate patients
How a Kidney Cancer Survivor Became a Partner in His Care
The Importance of Providing Patient Support in the Face of a Life-Threatening Illness
About Inspire
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3
Introduction
Welcome to ExpertsbyExperience2016. We’re proud to note that this is our fourth annual compilation of
columns written by patients and caregivers for Stanford Medicine’s Scope blog.
You’ll see in this compilation insights into an array of diseases and disorders--Charcot-Marie-Tooth,
kidney cancer, Ehlers-Danlos Syndrome, spontaneous coronary artery dissection, neurofibromatosis,
Crohn’s disease, deep vein thrombosis, bipolar disorder, Marfan syndrome, and more.
We thank Stanford Medicine blog editor Michelle Brandt, director of digital media for Stanford’s
medical school. We also salute Larry Chu, MD, the Stanford physician and Medicine X conference
organizer who continues to champion greater patient involvement in healthcare. Thanks as well to
Jimmy Lin for writing the foreword to this report.
Finally, thank you to the guest columnists. By sharing your stories, you educate, inspire and
empower us all.

Together we’re better,
BrianLoewisco-founderandCEOofInspire.
BY BRIAN LOEW

4
Connectivity Brings Knowledge and Hope
Healthcare is rapidly changing, nowhere more rapidly than in the field of genome sequencing.
It has unlocked the potential for diagnosis and revolutionized the medical approach and treatment
of diseases, both rare and common. With this revolution, there is potential and that potential is called
personalized medicine. Never before was there the ability to make medicine so personal as to look
at an individual’s risk for disease based on their own genetic makeup, combined with lifestyle and
environmental factors.
The traditional roles and relationships between patient and physician have radically changed over
the years, altered in part by advancing technology. There is a complicated mix of stakeholders and
perspectives on care, with a new voice taking a more prominent and needed role--thepatient. Today,
many more patients are educated consumers of their healthcare and now empowered by the Internet,
where they access resources as well as a global network of support. Armed with knowledge, patients
have more ability to ask informed questions and feel as though they are in control of their health as a
partner at the table of their medical team.
Many individuals with a chronic medical condition have a feeling of isolation. As patient advocate
Pamela Sloate says in her column here on page 7,“I didn’t encounter a soul with dystonia until my mid
20s. Often, I felt apart and alone. It was a challenge viewing my condition with any kind of perspective.
How I wished there was someone out there who understood.”
This feeling of isolation is compounded by those living with rare or ultra rare diseases. Patients of this
type visit specialist after specialist, given many tests, and unfortunately often--no concrete answers,
so the feeling of isolation can grow. The diagnosis alone with traditional medicine could take years.
Through DNA sequencing, the journey through diagnosis can be dramatically shorter.
Building a community of support through connections with others with the same condition can have
a powerful impact. What these communities have in common is the ability to participate in discussions
bridging the gap of distance in miles to fingertips online. And the sharing is in itself therapeutic. As rare
disease patient advocate Jonathan Rodis says in his column on page 15,“I want to be a source of support
and let patients know that they’re not alone and that there are better days ahead. Not only am I helping
others advocate for themselves but also by doing so, I help myself. It’s a good feeling to help another
person; it’s my medicine for dealing with my day-to-day health challenges.”
Stories shared through communities of individuals can provide insights into care, journeys and hope
for the future. It may not be considered cutting edge, like genomics sequencing, but it is good medicine,
and essential. Connectivity to others can turn sharing experiences into knowledge and hope.
FOREWORD BY C. JIMMY LIN, MD, PHD, MHS
C.JimmyLin,MD,PhD,MHS,isfounderandpresidentoftheRareGenomicsInstitute,anonprofit
researchandadvocacyorganization.HeisanadvisortothePatient-CenteredOutcomesResearch
Institute(PCORI),anindependentnonprofit,nongovernmentalorganization.

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Letting Go
of My Secret
About Charcot-
Marie-Tooth,
didn’t do anything to help the situation other than
confirm that I had a serious disease that would
continue to burden my me. I became a master of
making excuses for why I couldn’t join in activities
like volleyball, jogging, aerobics, hiking, walk-a-
thons, and much more. Social events even upset
me, and I became more isolated.
It wasn’t until my disease progressed to the point
that I needed braces to help me walk that I could
no longer keep my secret. While researching online
for bracing options, I discovered the advocacy
organization Hereditary Neuropathy Foundation.
In finding the foundation, I realized I wasn’t alone:
Many others felt as I did. I agreed to conduct a
letter-writing campaign, letting friends and family
know about the diagnosis and why I wear leg
braces; doing so helped people understand why
I made changes in my life in order to adapt to
my CMT.
I even told my family doctor about my diagnosis –
something I hadn’t done before and something
that was a big deal since that meant it would be
documented in my medical records. (I had been
warned about the documentation of a pre-existing
condition causing problems with insurance since
the day I was diagnosed. Luckily, that’s not an issue
any longer.) He took the time to research the
disease and to listen to me when I shared how the
disease had progressed and was affecting me, and
he even offered some really good suggestions.
I’ve tried hundreds of different versions of my story
to try to get people to understand.“I walk funny
because I have Charcot-Marie-Tooth, also known as
CMT. It’s named after the three doctors that
discovered it: Charcot – Marie – Tooth. It’s a type of
Muscular Dystrophy – but not really… It’s a genetic,
progressive, neuromuscular disease that affects my
legs and feet, arms and hands – and my diaphragm.
It makes me tired. I’m sometimes in a lot of pain.
Currently there is no treatment or cure. It’s just
something I am living with.” Blah…blah…blah. I can
see the person I’m talking with zoning out and I
know I’m losing him. That’s hard because I’ve only
just recently opened up about my CMT. I want my
friends, family and the world to understand why I
have struggles and limitations.
I’m 46 years old, and I was diagnosed at 13 years
old. It’s been a secret I’ve kept hidden for 33 years.
CMT is by definition a rare disease, affecting fewer
than 200,000 people in the U.S. Before the
diagnosis, I tripped and fell a lot. When the
pediatrician tapped on my knee to test my reflexes,
nothing happened (I always thought he just must
be seeing something I didn’t see because he looked
puzzled, but then moved on without commenting).
I was constantly spraining my ankles and
bandaging my knees from falling so much. Finally,
the CMT diagnosis explained it. But it certainly
“The biggest disease no one
has heard of”
BY JOY ALDRICH
“I could no longer keep my
secret...Doing so helped
people understand why I
made changes in my life in
order to adapt to my CMT.”

Letting go of the secret allowed me to heal and
focus positively on my CMT and all that goes with
it. I committed to a low-carb diet plan combined
with very moderate cardio activity, and I’ve lost 41
pounds since August. I’m more happy than I’ve
been in years, and I’m proud to now let people
know all about CMT. I’m still working on how to
best tell my story, but that will come in time.
JoyAldrichof Seattle,WashingtonjoinedHereditary
NeuropathyFoundationasAdvocacyDirectortofocus
onthegrowthofHNF’sonlinesupportresourcesfor
CMTpatientsandcaregiversandtoadvocatefor
patientrecruitmentinclinicaltrialsthroughGlobal
RegistryforInheritedNeuropathies(GRIN),apatient
clinicalregistry.
Together, we are both optimistic about the first
potential treatment for CMT1A, the most common
form of CMT. The drug is PXT-3003, which is being
developed by Pharnext, an advanced clinical-stage
biopharmaceutical company. I’m excited, and I
hope to participate in the phase III clinical trial later
this year.
When I opened up
about my story, I
thought I was letting go,
but I was actually just
finding a different way to manage my feelings. The
outpouring of support I received gave me the
confidence and empowerment to get even more
involved in raising awareness and money for “the
biggest disease no one has ever heard of.” I’ve raised
funds for HNF, written a few awareness articles,
and participated in public service announcements
for CMT Awareness Month, which is September.
For more on this topic, visit cmt.inspire.com

My Dance
with Dystonia
condition with any kind of perspective. How
I wished there was someone out there who
understood.
How far we’ve progressed over 40 years. Accessing
health information is as easy as a trip to Google to
enter a superhighway, rife with two-way traffic.
Significantly, information flows from patients as
well as to them. Abundant resources have ushered
in an era of patient empowerment where the
scientific community no longer holds a monopoly
on medical explanation. In this era of cyber-
connection, patients have stepped forward to
educate themselves, chronicle their stories and
support one another. Health activism burgeons
across the Web. Online support networks abound,
even for a rare condition like dystonia.
Launching my own dystonia blog (Chronicles of a
Dystonia Muse) seemed a rash step until I found
myself amid a veritable revolution of personal sites
and health communities steering disability and
chronic illness into the light.
As for me, it’s the same cha-cha-cha – stepping
forward, then back. But in this age of openness,
I’ve moved on to a better place deep inside myself,
traveling untold miles along the road to self-
acceptance. The fellow patients I encounter serve as
an unending reminder that I’m not alone in my
health struggles and lend me critical perspective.
I may not move like everyone else but at my core
I’m just like everyone else.
PamelaSloateisahealthactivistwhoisinvolvedinan
arrayofawarenessefforts.Shemoderatesapatient
supportgroup,advocatesforthedystoniacommunity,
andadvancesfundraising.SheholdsdegreesfromBrown
UniversityandNYUSchoolofLaw.HerblogisChronicles
OfADystoniaMuse.
My dance with dystonia, a rare neurological
movement disorder, has been a mangled cha-cha-
cha with a wayward partner. Seems I keep taking
steps forward then back — ever shifting my center
of gravity — while engaging in a never-ending
battle over who assumes the lead. In terms of
mechanics, think of dystonia as a travesty of
muscular timing orchestrated by the brain and
executed by body parts moving off tempo. Imagine
trying to master a new dance routine and your feet
fly over the dance floor in scattered disarray.
That’s dystonia.
Life took its unexpected turn when I was 8 and
various body parts began to assert minds of their
own. First my right arm insisted on straying off
course when I wrote. Then the chaos spread to my
left leg. In a creeping progression that eventually
stabilized, a degree of unrest extended to all
my limbs. Articulatory challenges gradually
manifested. While dystonia is a game changer,
over the years it’s become my second skin. I find it
hard to recall time before dystonia.
When I was diagnosed in the 1970s, patients and
their families exhibited far greater reluctance to
broadcast their health conditions, especially when
a disorder struck early in life. Disability was all too
absent from the landscape, especially living in a
small suburban town. We’d yet to witness the
proliferation of the Internet let alone a grid of
online media breaking down barriers and opening
up lines of communication. I didn’t encounter a
soul with dystonia until my mid 20s. Often, I felt
apart and alone. It was a challenge viewing my
BY PAMELA SLOATE
For more on this topic, visit geneticalliance.inspire.com

Welcome to Your
New Country:
survived what many do not, I frightened myself
by weeping openly over nothing in particular. I
slept in my clothes. I didn’t care how I looked or
how I smelled. I had no interest in reading, walking,
talking, showering or even getting out of bed.
Everything seemed like just way too much trouble.
Where once I had been competent, I now felt
unsure. Where once I had made decisions with
sure-footed speed, I now seemed incapable of
deciding anything.
And my worried family and friends couldn’t even
begin to comprehend what was going on for me
– because I could scarcely understand it myself.
Sensing their distress, I tried to paste on my bravest
smiley face around them so we could all pretend
that everything was “normal” again. But making
even minimal conversation felt so exhausting that
it eventually seemed so much easier to just avoid
others entirely.
I also felt deeply ashamed that I just couldn’t seem
to pull myself together as I struggled with what was
ultimately identified as depression. Studies suggest
depression strikes up to one-third of all heart attack
survivors, yet remains largely unrecognized and
ignored by cardiologists. At the 2015 American
College of Cardiology conference, researchers
warned: “Clinicians should assess all patients for
My doctor once compared my uneasy adjustment
to life as a heart patient with being like a stressful
move to a foreign country.
I used to be pretty comfortable living in my old
country, pre-heart attack. I had a wonderful family
and close friends, a public relations career I loved, a
nice home – and a busy, happy, healthy, regular life.
Then on May 6, 2008, I was hospitalized with what
doctors call a “widowmaker” heart attack.
And that was the day I moved far, far away to a
different country.
Many who are freshly diagnosed with a chronic and
progressive illness feel like this. The late Jessie
Gruman, PhD, who spent decades as a patient,
described in a Be a Prepared Patient Forum
column that sense of being drop-kicked into a
foreign country: “I don’t know the language, the
culture is unfamiliar, I have no idea what is expect-
ed of me, I have no map, and I desperately want to
find my way home.”
Deported to the foreign country called Heart
Disease, I too found that nothing around me felt
familiar or normal anymore once I was home from
the hospital. I felt exhausted and anxious at the
same time, convinced by ongoing chest pain,
shortness of breath and crushing fatigue that a
second heart attack was imminent. I felt a cold,
low-grade terror on a daily basis.
Instead of feeling happy and grateful because I had
A heart patient on her
“travels” with heart disease
BY CAROLYN THOMAS
“Deported to the foreign
country called Heart
Disease, I too found
that nothing around me
felt familiar or normal
anymore once I was home
from the hospital.”

Eventually, that’s what I did, too. I applied and was
accepted for the annual WomenHeart Science &
Leadership Symposium for women with heart
disease at Mayo Clinic – the first Canadian ever
invited to attend this unique community-educator
training. I launched a blog and, as my health
allows, have spoken to thousands of women about
heart disease – our #1 killer.
My public relations friends tease me — this is what
happens when a PR person has a heart attack. We
just keep on doing what we know how to do best:
writing and speaking and looking stuff up.
In this new country, I still have the same wonderful
family, close friends, a nice home – but that busy
career – and so much more – are gone. Rarely a
day goes by without wishing I could go back to my
old life. The reality, however, is that some of us
living with chronic illness have been forced to
permanently surrender our passports and will
never return.
Welcome to the new country.
CarolynThomasisaheartpatient,bloggerandspeaker
aboutwomen’shearthealthissues.Herwritinghas
beenwidelypublished,includingintheBritishMedical
Journal.In2012,shewasawardedanePatient
ScholarshiptoattendStanford’sMedicineXconference.
ThisisanexcerptfromanoriginalpostonCarolyn’sblog,
HeartSisters.
depression like any other cardiovascular risk
factor such as high blood pressure and high
cholesterol levels.” The distress of adjusting to such
a debilitating change to one’s life is hard to describe
to people who have never experienced it – those
living with what psychologist Ann Becker-Schutte,
PhD, terms “healthy privilege.”
I was referred to our regional pain clinic to address
intractable symptoms, had to go back into hospital
for another cardiac procedure, was newly diag-
nosed with inoperable coronary microvascular
disease, and then finally, gratefully (after I learned
that asking for help is not a sign of weakness), I
found a skilled psychotherapist to work with.
Susannah Fox once wrote that many people who
are “dropped into this kingdom of the sick” band
together and form posses like “pioneers sharing
maps with newcomers.”
For more on this topic, visit womenheart.inspire.com
Susannah Fox once wrote
that many people who
are “dropped into this
kingdom of the sick” band
together and form posses
like “pioneers sharing
maps with newcomers.”

Navigating a Rare
Genetic Disorder
with a Positive
Attitude
am not inspirational. I am human. There are days
when I feel frustrated, overwhelmed with the
changes in my life, and even a little cranky. It’s OK to
admit it, because I’ve got a family who loves me
through all of it. If I seem a little quiet or snappy,
you may be meeting me on an off day. We all have
off days — disability or not.
Those of us with disabilities also have our own way
of coping with them. For me, it’s humor. It’s the
reason I had a bright pink cane for a time. If I was
going to have to deal with using a cane because of
the 12q, I was going to find the brightest prettiest
cane I could find and rock the heck out of the 12q.
To help cope with my disability, I laugh at my
unique perspective. I laugh at life itself. Like the
night I mistook the pizza delivery car for a taxicab.
(In my defense, they did both have lights on the
roof.) Or the night my daughter called and I
mistook the word sausage for prostitute. I still
haven’t lived that one down.
There’s another way that I’ve learned to deal with
my disability, and that is to get out in the world and
deal with it. That means I travel, often by myself. If I
come up against a roadblock, then I figure my way
around it right then and there. As a result I’ve
learned to use my adaptive equipment to help me
ride escalators, and to use curb cuts on days when
I’m having trouble judging the edges of things.
These days I impress myself with what I can do with
technology. I’ve learned to use a Nook and close
caption the television. I have an alarm on my tea
mug to let me know when it’s full and have even
Seven years ago, when my youngest child was
diagnosed with chromosome 12q duplication
syndrome, I learned that I too had the syndrome.
It’s a rare condition caused by the abnormal
duplication of the long arm of chromosome 12,
leaving three copies rather two. At that point the
12q was more of a footnote to my hectic life.
Syndrome or not, life went on. There was work and
the children and hundreds of other things to think
about, none of which the 12q really affected.
The syndrome that hadn’t affected my life too much
reared its ugly head two years ago while I was
driving home one night. In an instant, a highway
exit disappeared from view and came back, giving
me an extreme “What the heck was that?” moment.
Little did I know that this episode was about to
usher me into the world of visual impairments. I
now have forearm crutches to help me walk. My
visual distance impairment changes are frequent,
and I have slight hearing loss.
Because I’m an advocate for people with
disabilities, some praise me as inspirational. But I
BY CARLA CHARTER
“If I come up against a
roadblock, then I figure
my way around it right
then and there.”
“I was going to find the
brightest prettiest cane
I could find.”

you. Ask me about my kids and you may not be able
to stop me. Treat me as if the crutches, the visual
impairment and the hearing loss don’t exist and
we’ll be instant friends. And always, always please
remember, I am you.
CarlaCharterisawriter,specialneedslegislative
advocateandmothertothreeremarkablechildren.
Shehasduplication12qsyndromeandis,inherwords,
learningeverydayhowto“rockherdisabilityinthe
realworld.”
applied for a close captioned phone – who knew
they even existed! I thumb through catalogs and
have even attended an abilities expo recently in
search of more equipment to help me remain
independent.
I am not my disability. I am more than my cane, my
crutches, my visual impairment and my hearing
loss. Before all of that I was just like you. I was active
and I worked, took care of my kids, laughed, hung
out with my friends. None of that has changed.
For those who meet me: Get to know me as a
person. Ask me about my latest novel and I’ll tell
For more on this topic, visit geneticalliance.inspire.com

Living with the
Uncertainty of NF
become a college graduate.
But in October 2013 all that changed.A week before
her 30th birthday,I had to give Megan the news
that she had aggressive breast cancer.We learned
that people with NF have a four times greater risk of
having breast cancer.
Megan has had a double mastectomy,
reconstruction surgery,two rounds of chemo,
and now doing radiation and a 3rd round of chemo.
We have approached her breast cancer as we have
approach her NF–by taking one day at a time–
and living this way has truly helped her stay positive
thru her treatments.Even with her NF,Megan has
never asked,“Why me?” She handles all of this with
amazing courage and grace.She is my hero.
Five years ago I met a group of mothers whose
young children were recently diagnosed with NF.
I wanted them to meet Megan to see how bright
their children’s futures can be; I wanted them to
know it’s not all gloom and doom.
If we can keep the doctors at the microscopes
so they can find a cure for this horrible disorder,
maybe we can make patients’ quality of life
better and not so scary and uncertain.Research
money is what will allow that to happen.
When Megan was first diagnosed,a dear friend said
how sorry she was,and that she just couldn’t find a
silver lining in all of this. But my friend was wrong.
Through this journey with Megan and NF,we may
not have seen it right away,but it was there: All the
amazing,caring and generous people we’ve met
along the way are the silver lining.
KateDufflivesinMassachusettswithherfamily.
Forthepastthreedecades,throughNeurofibromatosis
Northeast,DuffhashelpedraisemoneyforNFresearch.
When our adult daughter Megan was about three
years old, I noticed several bumps on the side of her
head, and some brown spots on her belly.After
meeting with her pediatrician,Megan had surgery
to remove the bumps.
The week after the surgery,her surgeon called to
say that what he removed were tumors and that
Megan had neurofibromatosis (NF),and that we
would be hearing from her pediatrician,and he
hung up the phone.This was in 1987.There was no
quick or easy way to look up information on NF,and
never mind trying to research–I had NO idea what
the surgeon even said.
Our pediatrician told us what NF was and that
Megan most likely had this disorder,but she
had never had a patient with NF.She gave us a
Neurofibromatosis Northeast pamphlet that
detailed what seemed to be a lot of scary things
about the disease.We left the office overwhelmed
and just couldn’t believe that our perfect little girl
had this horrible disorder.We agonized about
Megan’s future.
The next day, I called the number on that flier.That
was a lucky day for my family and me.The nonprofit
organization Neurofibromatosis Northeast and its
director, Karen Peluso,have saved my family and
Megan many times over the last 28 years.
Although NF has brought us challenges,it has
never been too serious or life threatening.Megan
has had her share of surgeries to remove painful
and disfiguring tumors,and she has dealt with
learning disabilities that she has overcome to
BY KATE DUFF
For more on this topic, visit nfnetwork.inspire.com

On Growing Up
with Chronic
Illness:
I truly felt detached from my body. It wasn’t mine.
I didn’t know how to handle it. I despised it. It was
the source of so much pain. And so, I wanted to
leave it.
I never connected my inability to stick up for
myself with being a child of chronic disease until
the last couple of years. As I reflect back, the
correlation is so clear. I never was taught to
question what my doctors did to my body. I cannot
recall being asked if it was “okay” to be examined or
to be touched. If I was in a doctor’s office, it was
just assumed and expected. To be clear: There was
absolutely never anything inappropriate that
happened to me in my doctors’ care. I think the
only reason that the perceived lack of power on my
side affected me is because I was a child, and I
didn’t have the capability to differentiate the way I
handled my body in the care of a doctor versus the
hands of a teenage boy.
At the age of 24, I had once again lost control of my
body. My Crohn’s was in a full-force attack and
resulted in me having multiple surgeries. I’m now
living with a permanent ileostomy bag. At first,
I resisted it with an iron fist, viewing it as my
opportunity to stick up for myself and say “no.”
I tried every diet in the world, I tried every natural
path – just to prove that that I could heal myself,
that I had the power, that I was the one who could
call the shots on my body. But, I eventually had
to succumb.
I’ve made it my life’s mission to not allow this
ileostomy bag to drag me down. Yes, if I had had it
my way, I wouldn’t have had the surgery or the bag.
As a child who was diagnosed with Crohn’s disease
at the age of nine, I learned to give my power over
to my doctors and parents. I never questioned the
constant prodding, the pain that I had to endure
from different tests and exams, the dozen pills that
I swallowed down each day, because after all, I was
to trust doctors and adults. They knew what was
best for me. They knew what was best for my body.
And of course, this is true – but only to an extent.
Please hear me out.
In no way am I undermining the miraculous work
that medical professionals do each and every day.
I am beyond grateful for the way that my disease
was handled, I was given a fairly normal childhood
because of the way my medical team was able to
manage my disease. And on top of that, I have the
most incredible parents who handled my disease
beautifully; they allowed me to feel supported,
loved and taken care of. Honestly, I just had to show
up for doctor appointments, swallow pills, and be a
kid. I left the details up to the adults.
But then I started growing up. High school, boys,
and school dances became my new normal. I lost
my power at the age of 17 when I was date raped.
Although I attempted to say “no” and stick up for
myself, I ultimately didn’t know how to confidently
do this. I didn’t know how to command respect
because I was so used to never being asked to say
“yes.” Unfortunately, this situation snowballed into
another date rape and ultimately a suicide attempt.
“I’ve never felt like I had
ownership over my body”
BY DANA GATZIOLIS
“I’ve made it my life’s mission
to not allow this ileostomy
bag to drag me down.”

medical community.
There needs to be some sort of initiative taken to
teach children that they are involved in their care
– even if it’s just a simple question before an
intrusive exam. It seems simple, but I truly believe
that this can help build up a sick child’s ability to
stand up for him or herself as they grow into
adulthood. I stand in solidarity with all children
and adult children of chronic disease and ask for
this idea to be examined. Please give us our power
and dignity so that we may grow up to be confident
adults and able to stand up for ourselves.
DanaGatziolisisahealthcoach,countrysinger/
songwriter,author,andostomyadvocate.Sheloves
helpingwomen(andmen)tofallinlovewiththeirbodies
andtheirlives,onestepatatime.She’sgotaknackfor
hittingfearoutoftheparkandlivinglifeoutloud.She
blogsatdanagatziolis.comandisalsoonTwitter.
But instead of putting this in the same category as
the other times I lost my power, I’ve chosen to shift
my perception. My power now resides in my ostomy
bag. I am healthy, I can live fully, I’ve learned so
much about who I am and what I want, I know
what I deserve, and I’m truly committed to being
the light for others.
Today, I can truthfully tell you that I don’t regret
anything. I’m grateful for every obstacle and for
every hurt because it has brought me to the
woman that I am today. And I love her. But still,
my story needs to be heard – and I beg for this
conversation to be opened up in the pediatric
For more on this topic, visit ostomy.inspire.com
“I beg for this conversation to
be opened up in the pediatric
medical community.”

“What Might They
Be Interested
in Learning
from Me?”
health challenges.
It can be daunting, however, to do advocacy work
and to reach out to the medical community,
whether it be a hospital, a medical school, a local
health fair, a private medical practice or your own
doctor/health-care provider’s offices. In the last 15
years of working on various forms of medical
advocacy, I’ve found through trial and error some
useful steps in obtaining the best results in each
area of the medical community and all health-
related entities.
There are several suggestions you can make to
a hospital representative regarding medical
advocacy. You could ask for an awareness table at
the hospital, to be manned by knowledgeable
support staff, on your condition; suggest that
you provide literature to various departments on
the condition that pertains to their particular
specialty; or inquire about the opportunity to tell
your personal story and answering questions from
individual departments/staffs at the hospital.
One way to improve your chances of gaining an
opportunity for advocacy is to ask your own doctors
to help, especially if they’re affiliated with a local
medical school or have good contacts at the
hospital and/or medical school you would like to
advocate to. They may teach or present at affiliated
hospitals and medical schools and/or know doctors
who do or key administration representatives to
talk to.
Being an advocate to the medical community is an
important way to raise awareness of your condition.
Many people throughout the years have asked
me why I became an advocate, and my answer is
found in what was a perfect storm of several factors.
One large one was losing my ability to work in
the executive career that I had made major
advancements in. This loss, coupled with having
to navigate the social security disability system
and the back-and-forth with my private disability
insurance company, made my overall health
(both physical and mental) much worse. It’s one
thing to have to suffer with one’s health (or lack
thereof) but to have to fight for benefits that
you’ve earned and payments from a private
insurance policy that you’ve paid decades for,
while dealing with the many financial challenges
that accompany the incredibly difficult decision
to stop working make for a very lonely and
aggravating time.
By going through rough times, I learned what
works and what to avoid – and I made a promise
to myself that I would help others through the
process. I want to be a source of support and let
patients know that they’re not alone and that there
are better days ahead. Not only am I helping others
advocate for themselves but also by doing so, I help
myself. It’s a good feeling to help another person;
it’s my medicine for dealing with my day-to-day
Tips on medical advocacy
BY JONATHAN RODIS
“It’s a good feeling to help
another person; it’s my
medicine for dealing with
my day-to-day health
challenges.”

that they could utilize to help future patients with
my condition?’
Armed with factual information and the power
of your own story is key to improving not only
the awareness of your condition in the medical
community but hopefully the quality of care for
all those with your condition who walk through
their doors in the future.
JonathanRodishasMarfansyndrome.He ispresidentof
theMassachusettsChapteroftheMarfanFoundation,
andchairofthePhysicianAwarenessCommitteefor
MarfanandEhlers-Danlossyndromes.
It’s important to keep in mind, also, that your
message is a powerful and important one when
it comes from your own or a close loved one’s
experience with the condition that you’re
advocating for. Having a condition, knowing all the
facets of its symptoms and the key factors that
most doctors and medical students may not know
should be an integral part of your message in
advocating for your condition.
No matter what type of medical advocacy you
want to start first, take time to consider what
message best fits the individual or organization
you’re interested in contacting. It’s always a good
idea to step back and think,‘What might they be
interested in learning from me about my condition
For more on this topic, visit eds.inspire.com

Surviving a
Betrayal of
the Heart
day, an angiogram found a tear in the innermost
wall of my coronary artery called a spontaneous
coronary artery dissection (SCAD). This tear causes
blood to flow between the layers of the arterial
wall, blocking blood flow and causing a heart
attack. SCADs are rare, yet, nearly 80-90 percent of
SCAD patients are women in their early 40s with no
additional risk factors.
It’s not yet known what causes SCADs. So, I am
left with a lot of unanswered questions, and I’ve
had to slowly rebuild trust in my own body and
abilities, knowing my condition is rare and
poorly understood.
At the beginning, I was pretty wobbly. I was
participating in my care and learning all I could
about SCADs, but I was traumatized by the event
and from carrying the weight of this new reality.
I looked like I was doing well, but inside, I hadn’t
reconciled with my new, fickle body.
Gradually, I started regaining trust in my body. With
a little anxiety, and often with company, I resumed
hiking, biking, warm-water swimming and skate
skiing. I had an episode of ventricular tachycardia
four months after my SCAD, so I was on a short
leash for a long time. Yoga was an important part
of my recovery because it allowed me to move and
This is a story about a betrayal of the heart — an
actual heart. Girl has heart, girl treats heart well,
heart gets torn up and girl figures out how to
recover from this betrayal by her own body.
Last summer, I participated in my second sprint
triathlon. The first part was a half-mile swim in a
cold lake. I’d been swimming this distance for
months and had done this same triathlon before.
Yet, I couldn’t catch my breath, my chest hurt and
swimming was appallingly hard for me. But I
persevered and finished the biking and running
events just fine.
Two weeks later, unnerved by my unsuccessful
swim, I steeled myself for a similar swim across a
lake in Idaho. Almost halfway through my swim, I
started struggling to breathe and felt a band of pain
and searing cold across my sternum. I felt weak and
cold and couldn’t swim anymore. Fortunately, my
husband was on a paddleboard close by. I called
him over, climbed on the board and hung onto his
ankles for dear life (vomiting occasionally) as he
paddled us to shore.
In retrospect, I had many of the typical symptoms
women experience when having heart attack, but
it took a while before it dawned on us that I was
suffering from one. I don’t fit the profile: I was 53,
nearly vegetarian, slim, fit with a mild addiction to
kale smoothies. However, I had just gone through
menopause and was on a low dose of HRT.
Fortunately, the ER doctor in Idaho did an EKG and
figured out I was having a heart attack. The next
BY DR. TINA PITTMAN WAGERS
“I am left with a lot of
unanswered questions,
and I’ve had to slowly
rebuild trust in my own
body and abilities, knowing
my condition is rare and
poorly understood.”

I have joined the board of SCAD Alliance and
am working on a survey for SCAD survivors to
help us understand how we can best address the
psychosocial needs of this population. As a
psychologist, this aspect of SCAD survivors’
experience is particularly intriguing and important
to me. I hope our work will help survivors, care
providers and family members understand what
resources and skills SCAD patients need to survive,
and survive well with happiness, resilience
and courage.
The knowledge that I had a heart attack is never
far from my mind. I no longer operate with the
same unshakable confidence — thinking if I treat
my body and heart well it can endure any
challenge. Now, I treat my heart well, but the
thought that it could betray me again has settled
into my bones. I’ve learned to carry this with me
and I hope that this has propelled me forward
much more than it has held me back.
Dr.TinaPittmanWagersisamom,wife,lifelong
athleteandaclinicalpsychologist.Sheisonthefaculty
ofCUBoulder’sDepartmentofPsychologyand
Neuroscience.Sheisaboardmemberthenonprofit
organizationSCADAlliance andisconductingadetailed
surveyofSCADsurvivors’psychosocialexperiences.
strengthen my body with exquisite moment-to-
moment awareness of what my body was capable
of doing.
One year later, I am doing about 90% of the
physical activities I was able to do pre-SCAD. I’ve
had incredible luck in this journey, and there’s
much I’m grateful for: a steady, kind husband who
has helped me navigate some tough procedures
and doctor’s visits; sweet, caring children (our two
sons are 20 and 17); amazing and generous friends
and family; and a job I love that loves me back.
I’m also thankful for access to scientific literature;
good health insurance; connections in the
medical community that led me to wonderful,
collaborative doctors;
and the ability to be assertive and courageous
when I ran up against a non-collaborative or rigid
care provider.
For more on this topic, visit womenheart.inspire.com
“The knowledge that I had
a heart attack is never far
from my mind.”

Laughing
Through the Pain:
I was so confused and in so much pain that I was
relatively curt with medical professionals. I also
thought that if I even smiled, they would think I
was faking my illness. But once my symptoms
started to improve a bit and I understood more
about what was happening, I tried being open
and jovial with those who were treating me.
The result was great; it should not have come as
a surprise that a doctor who likes his patient is
more likely to pay attention to her. Regardless of
how badly I feel or how much I think something
devastating may be happening to my body, I now
try my hardest to make whatever dumb jokes I can
manage in the hospital or at the doctor’s office.
The staff members, many of whom somehow
make it through day after day of maudlin events
and miserable people, respond quite positively to
my Tommy Boy quotes and ridiculous metaphors
about how the exam room smells like a robot
dog’s pee. (In fact, I would like to think I get better
treatment because of David Spade.)
The need to laugh off my issues has become so
innate that it is now my first response when I go
into shock. My old roommate loves to tell the story
of when I stepped onto our back porch and it
looked like a sniper hit me: I was down in an
instant. She ran out to see what was wrong and
found me laughing hysterically, screaming,“I’m
When you fall down at least once a week, you learn
to laugh it off. No matter how much it hurts, you
laugh because you know it makes other people
more comfortable with what’s going on. If they
believe you’re all right, your story is a comedy rather
than a tragedy. I’m quite sure that this lesson I
learned as a child (and have called on hundreds of
times since) had a big part in my decision to
become a comedy writer and performer, a career I
began a decade before I was finally diagnosed with
Ehlers-Danlos Syndrome.
Everyone with my rare connective tissue
disorder knows the routine of explaining our
condition to others. I like to gauge at what point a
healthy person’s eyes glaze over and they check out
completely; it’s usually around when I get to my
issues that are caused by EDS, like arthritis and
gastroparesis. After my first few monotonous
rundowns of what ails me failed to enthrall anyone,
I began weaving elements of humor into my
explanations: “I have hip dysplasia, so I can’t be in
the Westminster dog show… My joints hyperextend,
which is great for sex but terrible for JV soccer… I
tore my hamstring in Greece, but it’s not like that’s
the worst thing that ever happened there.” Once
engaged, people are much more likely to find some
aspect of my condition that interests them and ask
about that. This type of light interaction is far more
comfortable than feeling like I’m teaching an NIH
seminar on some disease nobody cares about.
In my experience, the people who really appreciate
someone with a sense of humor are those I rely on
most: Doctors and nurses. Just after my diagnosis,
A comedy writer’s experience
with chronic illness
BY PAULA DIXON
“In my experience
the people who really
appreciate someone
with a sense of humor
are those I rely on most:
Doctors and nurses.”

I do not know where my life would be without my
love of comedy, nor how I would have made it
through the ups and downs of Ehlers-Danlos
Syndrome. When it comes to relating to people,
passing time in the hospital, or just convincing
ourselves that there’s a lighter side to almost every
situation, the most important part of the human
body is the funny bone.
PaulaDixonisacomedywriterandphotographerbased
inLosAngeles.SheisagraduateoftheUSCSchoolof
CinematicArtsandtheSpéosInstituteofPhotographyin
Paris.FollowheronInstagram.
fine! Everything’s fine!” When I saw her worried,
maternal expression, it made me even more afraid;
I knew I had to alleviate her concern for both of our
sakes, so I kept up my laughing and made jokes
even as the unbelievable pain set in. As it turns out,
I had ruptured my Achilles tendon and torn my calf
muscle so badly that the orthopedic surgeon said it
looked “like pulled pork; like a zipper went down
the whole thing from top to bottom.” Looking back,
I laughed and joked to make my roommate think
everything was fine – the way you would treat a
toddler who fell down and looks to you to gauge
the severity of his injuries – but really I was the
toddler, and making myself laugh got me
through it.
For more on this topic, visit pain.inspire.com

Take it from Me: they are “less of a man,”“not capable of being a
good mother,” or other such nonsense. Psychiatric
medications are often first prescribed to people
in their early 20s who are not used to taking
medication. Most 20-somethings are still in the
“I’m invincible” phase.
I believe this can be remedied with education.
I’ve advocated for medical practices to offer
psychiatric medication classes. These classes
would cover the purposes of different types of
medications, the appropriate expectations for
patient’s compliance, and the patient’s
responsibility in using the medication to help treat
their disease. This information would be more
comprehensive than a quick chat with a pharmacist
and be tailored for psychiatric patients.
Medications, as all doctors know, don’t cure
everything. Therapy, support groups, and even
experience are part of the path to long-term
wellness. If a patient mistakenly thinks that
medication will solve all of their problems, they will
often stop taking them when this doesn’t happen.
When I left the psychiatric hospital with my
medications, I mistakenly believed all I had to do
was be “med-compliant” and I would lead a
productive and relatively normal life. Over the next
Whenever I give a speech to psychiatric
practitioners, I start by giving the group index
cards and pens and asking them to write down
their most important goal for their patients.
Answers like “be med-compliant,”“miss fewer
appointments,” and “follow my instructions” are
always the most popular. Patients’ answers are
much different. They write,“live well,”“go to Hawaii,”
or “get back to work.” This exercise serves as a
reminder to physicians that taking medication is
not a final goal, but a step toward the ultimate
goal of living well.
It’s important to realize that patients aren’t failing
to take their medication as prescribed because they
are incompetent, lazy, or intentionally self-sabotag-
ing. Patients often skip doses or skew directions
because they are scared of something, often due to
a misunderstanding.
They may misunderstand the prescription
instructions or the way the drugs work and
this misinformation quickly becomes fact in a
patient’s mind. They may already be confused by
their diagnosis and lack knowledge about their
condition. Once I understood how difficult it was
to find the correct combination of medications, I
felt much more hopeful.
More often than not, patients suffer from side
effects or even a perceived moral failure by taking
psychiatric medications. I’m surprised that many
clinicians aren’t aware of the stigma patients feel
about taking medication. They believe it means
To improve compliance with
psychiatric meds, we must
educate patients
BY GABE HOWARD
When I left the psychiatric
hospital with my
medications, I mistakenly
believed all I had to do was
be ‘med-compliant’ and I
would lead a productive
and relatively normal life.”

against it. Managing expectations and fostering an
understanding of the process improves the patient
experience and, therefore, compliance.
More than anything, we want our providers to
remember that mental illness can be pure hell. We
want to know they are dedicated to helping us lead
great lives and that they are taking our issues and
concerns seriously. Living with mental illness
means a lot of people in our lives don’t take us
seriously. We need to trust our clinicians, and for
them to trust — and educate — us.
GabeHowardisanaward-winningmentalhealth
writer,speaker,andadvocatewholiveswithbipolar
andanxietydisorders.Interactwithhimon
Facebook, Twitter,or hiswebsite.
year, every side effect, every med change, and every
setback was devastating. I didn’t understand why I
wasn’t getting better. I was doing everything I could
to be well. It was a lonely, isolating, horrible feeling.
It made me think I was the problem.
Once I understood how difficult it was to find
the correct combination of medications, I felt
much more hopeful. When a person feels like they
have input into their recovery, they will become
motivated to work with the process instead of
For more on this topic, visit mha.inspire.com
“I was doing everything I
could to be well.”

How a Kidney
Cancer Survivor
Became a Partner
in His Care
His daily schedule was impressive. The doctor
would arrive each morning at 6 a.m. to review the
treatment notes of the two or three patients
receiving IL-2, pay each of us a visit and then would
be off to see patients in the clinic or to perform
surgeries. He would usually stop by during the day
and he would always come by in the afternoon or
evening before going home. That visit would often
be after 6 or 7 p.m.
In addition to those visits, he had to be called by the
nurse prior to giving an infusion to a patient. Since
the patient could receive an infusion as often as
every eight hours if everything was okay, this meant
a call to his home in the night; sometimes he would
receive several calls if patients were on different
schedules.
In the ensuing years since those treatments, I’ve
come to realize that the vast majority of doctors,
nurses and other healthcare professionals have a
very similar commitment and passion for their
work. It is therefore only reasonable that I should
honor that commitment and passion when I’m
seeing them for an appointment.
I try to be on time and to be prepared to get the
most out of our meeting. I now view medical
appointments in much the same way that a
salesperson would view appointments with
prospective clients.
My life changed forever on a cold rainy November
afternoon in 1997 as I sat in a crowded emergency
room. A surgical urologist knelt beside my chair
and uttered five words,“You have cancer; it’s bad.”
A week later, the day after Thanksgiving, a huge
tumor that had completely enveloped my right
kidney was removed.
Prior to that diagnosis I had never heard of kidney
cancer and had little experience with the medical
community. I had not been to a doctor in years and
viewed that profession as one filled with persons
who had a good education, commanded a lot of
respect, had a luxurious lifestyle, and enjoyed a life
of relative ease. As it turned out, I was not only
ignorant about kidney cancer, I had a lot of miscon-
ceptions about doctors and the entire medical
profession.
In 2000, I was referred to a specialist in a medical
center some 90 miles from my home. This oncolo-
gist was knowledgeable about the only treatment
that had any degree of success in kidney cancer, a
very rigorous infusion therapy with many side
effects that required hospitalization.
A year later, cancer was found in lymph nodes in my
abdomen, and I entered the hospital to begin
treatments with interleukin-2 (IL-2). Although I
had been impressed by the patience and skill of this
doctor, it was during the IL-2 treatments that I
began to really see his commitment and dedication
to his patients.
BY MICHAEL B. LAWING
“I now view medical
appointments in much
the same way that a
salesperson would view
appointments with
prospective clients.”

it conveyed to the medical team that I was serious
about the care I was receiving.
That process has allowed me to learn a lot about
my condition, to be a participant in deciding my
course of treatment, and to develop a great
relationship with my healthcare providers.
MichaelB.LawingisadirectoroftheKidneyCancer
Associationandisinvolvedinmanycanceradvocacy
activities.
I prepare a list that details any information I need
to tell my care provider as well as questions that I
need to ask. It includes the medications I’m on, as
well as prescriptions that I need to have refilled. I
take notes, even to the point of recording them so
that I can review them later. If there are any words
or phrases that I may have difficulty in understand-
ing or in spelling, I ask for additional explanations
as necessary.
If I have
diagnostic
imaging
that is being
reviewed, I tactfully request not only a printed
copy of the imaging results but I also ask to look
at the images themselves in order to gain a better
understanding of the areas we are discussing.
The first couple of times I tried this more interactive
approach, it was awkward and slightly difficult, but
For more on this topic, visit kidneycancer.inspire.com
“That process has allowed
me to learn a lot about my
condition.”

The Importance
of Providing
Patient Support
in the Face of a
Life-Threatening
Illness
In the coming days, I was moved to the cardiac unit
(the youngest on the floor at just 29 years old) and
due to the persistence of one doctor who is now my
hematologist, I was diagnosed with antiphospho-
lipid antibody syndrome (APS). I soon learned that
APS is an autoimmune condition in which the
body mistakenly produces antibodies against itself
that contribute to abnormal blood clotting. APS,
combined with my use of estrogen-based oral
contraceptives, was to blame for my blood clots.
The coming weeks and months of my recovery
were the most difficult I’ve ever faced in my life.
I could no longer do the things I loved to do, like
run, or the things I had to do, like work, and I
needed to use an oxygen tank and wheelchair. My
strength was depleted, my leg and lungs hurt, and
I was grappling with a diagnosis of a lifelong
disorder that requires continuous care and
medication. I was consumed with unwavering
anxiety and depression.
The most frustrating part was that to everyone on
the outside, I looked and seemed fine, but I was
fighting the biggest battle of my life. I felt betrayed
by my body, which I had taken great strides to take
care of with healthy eating and exercise. I felt
completely isolated by what was happening to me,
and doctor support became crucial during the
extensive recovery period.
The hematologist who assumed my care was
ever-patient and supportive of what I was going
through. He answered my questions as many times
As a long-distance runner, I was accustomed to
pain of some sort, primarily in my knee due to a
lingering injury that often caused serious pain.
So, when I wrapped up a run one Saturday with
excruciating left knee pain, I really didn’t think
anything of it. But the pain persisted throughout
the weekend and was soon accompanied by a
stabbing pain in my left side and shortness of
breath.
I found out very quickly I most definitely wasn’t
alone, but I may have never known without
encouragement from my physician.
At the urging of my primary care physician, I went
to the emergency room and was admitted to the
hospital two days later. I had a blood clot in my
leg, known as deep vein thrombosis (DVT), and a
blood clot in my lung, known as pulmonary
embolism (PE). Having never been hospitalized in
my life, I was scared, weak, exhausted and in more
pain than I had ever experienced. I was put on IV
blood thinners and kept in the intensive care unit
for several days as doctors monitored my volatile
condition due to the blood clot passing
dangerously through my heart. I wondered what
was happening and whether I would survive.
BY SARA WYEN
“I felt betrayed by my body,
which I had taken great
strides to take care of with
healthy eating and exercise.”

situation. I found out very quickly I most definitely
wasn’t alone, but I may have never known without
encouragement from my physician.
In seeing how others
who survived a blood
clot were also struggling,
I became committed to
helping people through
the tough parts that I had already gotten through.
My passion for making a difference in the lives of
others as my doctor had done for me became the
driving force that helped me get through every
single one of my unimaginable days of pain, fear
and anxiety.
I encourage anyone who is recovering from a
blood clot to seek out a doctor who supports you
in your care, answers your questions, validates and
addresses your concerns and helps you make
connections to foster healing in your own life.
SaraWyenisafounderandwriterat
BloodClotRecovery.net,ablogdedicatedtohelping
patientsthroughtherecoveryprocessfromdeepvein
thrombosis(DVT)andpulmonaryembolism(PE).
Sheisalsothemanagerofcommunicationsand
healthmarketingattheNationalBloodClotAlliance,
avoluntaryadvocacyhealthorganizationdedicatedto
advancingthe prevention,earlydiagnosisandsuccessful
treatmentoflife-threatening bloodclots.
as I needed, and assured me that while I was
extremely ill, we would get through it together.
He listened to me and recognized early on in my
recovery that I wasn’t emotionally processing
what had happened to me, therefore becoming
depressed and anxious. He supplied me with
resources and, by listening, also validated my pain
and fear at facing a lifelong and potentially
life-threatening illness that I had known nothing
about.
Throughout my recovery, I began to see that
patient support for survivors of DVT and PE was
lacking, and finding a doctor who took an active
role in my care was crucial to moving forward from
my experience. After my doctor assured me I wasn’t
alone, I reached reach out to online support groups
and patient advocacy websites to further relate to
other individuals who had been through a similar
For more on this topic, visit stoptheclot.inspire.com
“The most frustrating part
was that to everyone on
the outside, I looked and
seemed fine, but I was
fighting the biggest battle
of my life.”

27
About Inspire
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online community has 800,000 patients and caregivers, and is organized by medical condition.
Inspire partners with over 100 national nonprofit patient advocacy organizations such as the American
Lung Association,National Psoriasis Foundation,Arthritis Foundation,and the Alzheimer’s Foundation
of America. Inspire helps industry connect with members for the purpose of clinical research, market
research, and promotion.
For more information, go to www.inspire.com, or contact us at team@inspire.com.
© 2016 Inspire. All rights reserved.
Joinusandconnectwithotherswho
understandwhatyou’regoingthrough.
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Experts by Experience 2016: A compilation of patient stories

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Experts by Experience 2016: A compilation of patient stories