Our Stories

Disclaimer: Each story submitted to The Ehlers-Danlos Society for this ‘#myEDS/#myHSD’ anthology is published “as-is,” with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors—and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.
I was born in 1958, a 4lb 13oz handful baby. My limbs were reported to be ‘rubbery’ – they told me I was nearly 4 before I started walking. ⁠
I was diagnosed with Ehlers-Danlos syndrome at the age of 28. If it wasn’t for my medical background, but more importantly my persistence that something was wrong with my body,
I was diagnosed with hypermobile Ehlers-Danlos syndrome about a year or so ago. It’s been a blur of validation, relief, grief, and so many more feelings that I’m still working
My name is Polina and my journey is pretty typical of many zebras. I started classical ballet at the age of 5 and continued well into my teens, I was
Like many of those diagnosed with Ehlers-Danlos syndrome (EDS), my symptoms started at a very young age. It was not until my late 20’s I received my diagnosis of hypermobile
If I reduced my life’s narrative to two words, they would be “Overcoming Challenges.” In the psychic and physical realm, nothing came easy. I had to fight for what I
My name is Hannah Holland, I am twenty years old and after quite the diagnostic odyssey, I was diagnosed with hypermobile Ehlers-Danlos syndrome a few weeks ago. For as far
My story began when I was really young. I started subluxing and dislocating joints when I was in kindergarten and elementary school. I was on crutches on and off constantly,
CW// Discussion of surgery and medical trauma When I was a child, I recall my mother suffering from daily migraines, and neck pain. The day before my 13th birthday, my
Growing up I was always the kid that was looked at funny, the one that did not really look like or do what everyone else did. From a tremendously young
My name is Natalie, I am 23 years old, and I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) only a few weeks ago. I was a dancer with extreme flexibility
Changing the world one mind at a time. Growing up, I, like most people, had never heard of Ehlers-Danlos syndrome. What I did know was that I was clumsy, and
It all began in college in my sophomore year. I got a massage at the mall just to try it, and then I was hooked. It wasn’t just for relaxation
My name is Kyle Fries and I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) when I was 14 years old. I have had problems for as long as I can
My Ehlers-Danlos syndrome (EDS) went undetected until I joined the army and during basic training, developed stress fractures in my hips. After being discharged and going into an Aviation Maintenance
I had my first shoulder dislocation at age 12 and my first knee dislocation; I now have about ten a day! Growing up I was naturally flexible and didn’t have
I am Emma, a zebra here to tell my story. ⁠ I was adopted from China and that is where my journey begins. The doctors here in the United States
Ever since I was little I was an active child, not necessarily sporty but always busy with something, from playing outside to knitting and crocheting. When I started first grade
No Zebra looks the same. No stripe is the same. Every body, experience, and combination of symptoms for those with Ehlers-Danlos syndrome (EDS) is different. Part of what makes EDS
When I was two years old, I peered through the window of the dance studio to watch my three older sisters take their classes. I was ready for my turn.
My name is Luca (He/Him) and I’m 36 years old. I received a diagnosis of classical Ehlers-Danlos syndrome (cEDS) at age 24. ⁠ ⁠ For 14 years I have been
When I was little, my favorite book was Heidi by Johanna Spyri. I have read the book so many times that I think I’ve got it memorized. The character I
My name is Charlotte I am 23 years old and I have hypermobile Ehlers-Danlos syndrome (hEDS) and Marfans syndrome. For as long as I can remember I have ached. Especially
TW: Contains discussion of eating disorders. I am 25 years old, I have had joint pain since I was a child, my mother constantly took me to the pediatrician and
Ever since I could remember, I have had to endure random and unexplainable injuries, body discomfort, and health complications, often what doctors brushed off as “growing pains” my entire life.
I have been diagnosed with hypermobility spectrum disorder (HSD) for two years now—and as an experienced genetic counselor, I didn’t know my constellation of symptoms equated to HSD. I am
I started having pain and issues around 7 years old, but it wasn’t until I was almost 16 that I was diagnosed with Ehlers-Danlos syndrome (EDS). I went through hundreds
Ehlers-Danlos has been one of the most challenging mountains to climb in life. From the actual symptoms to staggering medical collections. Beginning to end, it’s truly a strife too many
My story is one that spans thirteen years and counting. It is a story of desperation, destitution, and near homelessness. They say “whatever doesn’t kill you makes you stronger.” The
I am a 62-year-old disabled gay male. I deal with cardiovascular autonomic dysfunction and Ehlers-Danlos syndrome. A diagnosis I could not get the medical profession (even my rheumatologist) to even
Success consists of getting up just one more time than you fall. (Oliver Goldsmith) For me, the question is not whether you get up after a fall, but how often
I was diagnosed with hypermobile EDS (hEDS) in January 2018. In October 2019, I started experiencing debilitating fatigue and neurological symptoms. Over the course of the next year, parallel to
CW // Discussion of suicide and death. Growing up I rarely complained. I broke my wrists a few times, had the odd migraine and stomach pain, but that was about
CW // Contains discussion of mental health concerns and suicide. Whether mental or physical, I have always had the ability to write about my pain. Face to face, vocally, and
My name is Montse. I am 43 and I am from Spain. My life has been a constant struggle to live in a body that could neither eat nor exercise, while
Hi, I am Jaqueline, I‘m 18 years old and from Germany. I was diagnosed with Ehlers-Danlos syndrome when I was 17 years old. We still don’t know what subtype I
Hello, I’m Mpho, I’m 15 years old and I was born with Ehlers-Danlos syndrome I was diagnosed on 28 October which is my birthday, and I was diagnosed at the
Disclaimer: Individuals undertake their chosen activities at their own risk. My name is Jack Orman,  I am 24 years old and currently living in Colorado. I was diagnosed with hypermobile
I was born premature weighing just 2 lbs and 12 oz. I had developmental delays. A hernia operation at 2.5 years old while on vacation overseas. Then I developed extreme
I was very blessed to have an early diagnosis at five years old. Since my geneticist has played a major role in navigating my healthcare, I contribute my level of
My story is so crazy, but everyone probably says that. I didn’t have a parent who watched over my health as most parents do but looking back I can tell
I am a musician and teacher, diagnosed with EDS in 2020 at age 45. I have been suffering with symptoms of pain and fatigue (and more) since my mid-twenties, although
When I was a kid, I was always hurting myself whether a sprained ankle a trip, or a fall. I experienced growing pains, horrible menstrual cycles. I was always very
I finally figured out why my body seemed to be acting against me. I was 20 years old when I was first diagnosed with Ehlers-Danlos syndrome (EDS). I was in
My name is Maria Fernanda. Some call me Marifer or Mafer. In May 2021, I turned 23 years old and I am from Venezuela. I work in graphic design and
I had my first heart attack in 2003, but with minor damage and no explanation as to why I had it. In 2015, my second heart attack was discovered by
After twelve years, I have finally received the answer I’ve so desperately been searching for. My name is Kayla, I am 19 years old and I have hypermobile Ehlers-Danlos syndrome.
My name is Carin. I grew up here in Massachusetts, I was an avid backpacker and through-hiker, ecologist, explorer, traveler, dancer, and a hard worker. Now, I’m lucky if I
My story began with disappointments. I was playing soccer, qualifying for the Icelandic national team try-outs, and having to cancel due to injuries. I was injured most of my athletic
My school life was very erratic let’s say. I attended all my infant school years and the staff there were incredible and very supportive, some of which I still have
It was a 50/50 chance if I would have EDS when I was born. Unfortunately, I was born prematurely at 3lb 4oz. I have been struggling for 18 years. I
My name is Lena Nakaiya, and I’ve been Chronically ill and Disabled for ten years. It started when I was eight. My parents started noticing that I was in pain
Welcome to a day in the life of hypermobile EDS (hEDS) and its comorbidities. My head starts thumping during my sleep and turns into a sudden ice pick sensation (migraine)
It’s EDS, not in our heads… This battle is real, that you don’t understand. In pain each morning this makes us sad. But you don’t believe us, you think we
Hello! My name is Teena Amador and I am Ms. Pennsylvania US United 2021 and my platform that I plan to promote during my reign is chronic and invisible illness
My name is Paulina. I am 29 years old, Chilean, and I currently live in Taiwan. I have always been a physically and mentally very active person. Since I was
Hello, my name is Katie: wife, Mom of three, and EDS warrior. All of my life I felt like a freak. I always knew I was different. I can remember
My name is Markus and the following sentences are a little sneak peek of my life story… I was born in 1999 in Innsbruck, Tyrol, Austria. Born with clubfoot was
Hey! My name is Alisha and I have hypermobile EDS (hEDS), POTS, osteopenia, and a whole heap of other things. Last weekend I swam to Rottenest island from Leighton beach
It has been quite a long road. I’ve been in “observation” for over a year.  I’ve been genetically tested twice because my mutations are uncertain, but my physical exams and
I was diagnosed when I was 17. After three weeks in hospital for chronic pain in my sacroiliac joint (which left me unable to walk, wash my hair, or even
My story, like many others, began in Facebook groups while trying to network and figure out what my symptoms and lab results added up to. I was diagnosed with anxiety
There is no cure for EDS but each symptom can be managed separately. It is tricky because we sometimes have several specialists to manage each symptom, or comorbidity, which can
My name is Jessica, I am 16 years old. I was diagnosed with Ehlers-Danlos syndrome (EDS) in Columbus, Ohio, at the age of 15 after years of injuries: some with
Denial: A tiger in a zebra’s body.  “Have you in the last three months installed a shower rail?”   I said, “No, but does a 6ft male count?” The nurse chuckled
Hello, my name is Alyssa Kelly, and I was formally diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) by a geneticist when I was 21. My mother knew something was wrong from
When Halle was born and they placed her on my chest, I immediately knew something was different. As the labor and delivery nurse was wiping her down I remember she
From dark times I have always been hypermobile and very agile but I always complained of feeling aches and pains as a child; we thought they were growing pains. After
My daughter Tabby was finally diagnosed with hypermobile EDS (hEDS) in 2018. Over the years we saw around eight different doctors for her pain, injuries, stomach problems, and other issues.
The unknown I was originally diagnosed over five years ago with hypermobile Ehlers-Danlos syndrome (hEDS), by a medical professional who decided I was not worth their time. I was not
Hi! My name is Paul and I’m in the UK. I have finally come to the realization that Ehlers-Danlos syndrome (EDS) may be behind my ‘troubles’, but more importantly in
At 5 years old I remember my thumb and hips popping in and out of place. I would be in horrendous pain but I would keep it to myself. Then
Hi, my name is Lisa, and I’m a storyteller. I am a Public Artist with ArtworxTO for The City of Toronto for 2021. I’ve worked as an actress, a filmmaker,
My name is Lane Cooper. On October 23, 2016, I was stacking firewood with my uncle, when I went home I started urinating blood. I went to the ER and
I am 21-years-old, and I was diagnosed with Ehlers-Danlos syndrome (EDS) when I was six months old. My father has EDS as well, and he noticed when I fell off
CW: Contains discussion of self-harm Growing up I felt unique and different; I used to always freak out my friends by hyperextending my elbows and thumbs. I had no idea
I am 54 years old. Last week I just got the diagnosis that I was begging, even crying out to find. Ehlers-Danlos syndrome. Sounds like a complicated name. Of course,
I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) when I was 14 years old. As a child, my mother took me to the ER for dislocated shoulders so often that
When I sit, invariably I cross my ankles and they relax into this position. Sadly, this also means they give whenever they feel like it. My story is not uncommon
From a young age, I had various injuries and health concerns. We knew I was hypermobile but this was never linked to any other concerns.  I began rock climbing at
Hi, I am Devyn and I am 21 years old. I have classical EDS (cEDS). It took me six years to get a diagnosis, from age eleven until age seventeen.
One evening in 2007, I was on the computer at my home in Arlington, Virginia, browsing articles on CNN’s website when a headline caught my eye about a children’s band
This story was shared in Spanish, the English version has been translated and in the event of any discrepancies, the original version below with prevail.  I have always been the
Becoming Disabled… A reflection in people being uncomfortable with it; including myself. Condolences, sad faces, private messages offering advice on just about anything I could do to “fix me”, that
Ever since I was young, I was always “different”. I amused my friends and adults by contorting my body into weird shapes. The hyperextension in my arms, abnormally long fingers,
I was diagnosed with EDS after two years of doctor visits and a lifetime of unrelated health problems. Originally, I was searching for the reason why my chronic pain syndrome
After decades of dealing with quirky, what I thought were unrelated, health issues I was finally referred to a specialist in Boston. Last month, after a thorough evaluation and review
I was recently diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). I also fit the criteria of arthrochalasia EDS (aEDS), although COVID-19 has paused my testing. When I first started experiencing dislocations
All of my life I knew I was different. Constantly spraining my ankles, being able to take my jaw out of the socket, very flexible, knee surgeries, premature labor with
I was born in the ’70s… My parents were told I was born with “mushy muscles”. I didn’t walk until I was 20 months old, but I managed and I
I suffered from symptoms that started around the age of 16. I noticed that I couldn’t complete a softball practice without having to stop and catch my breath and take
The rush of feelings like bubbles during the first pour of champagne. My heart beating as though I am running the NYC marathon (a dream that will always remain a
I have always been hypermobile, had elastic skin, joint pain, and lots of other common symptoms of Ehlers-Danlos syndrome. However, I was not diagnosed until I was almost 16 years
I, like many working people, especially working mothers can do what I call ‘struggle with the juggle’ of everyday stress, demands, to-do lists, and overbooked calendars. Then add on chronic
Cecily is a vibrant and social, but tender-hearted 12-year-old ballet dancer who, despite her multiple diagnoses, not only finds true joy in the day to day but inspires it in
Like far too many in our community, I had been on a very long and very lonely journey to my diagnosis. I was 24 when I graduated from Medical School
Hey, y’all! I’m Abby. I’m a senior in college and will graduate this December with a Bachelors’s degree in Green and Sustainable Business Management. I’m an adaptive athlete and do
My life has been nothing short of exhausting. There’s nothing like a life interrupted to gain perspective.  Having grown up with a brother who suffers from quadriplegia and profound retardation
I come to you today as a patient expert, disability justice activist, and advocate.   Advocacy and activism is work that many people find themselves doing as a direct result of
There are so many times where I’ve been to a doctor’s appointment, emergency room, etc. and the physician uttered the phrase I dread the most, “There’s nothing we can do.
I served eight years in the United States Army as a 12 bravo -Combat Engineer. We carry all explosives that you would need to clear or breach any obstacles in
My name is Kayla Myers. I am 24 years old. I have many health issues, physical and mental. I am a blind gamer, I play video games with no useable
My wife, Molly was diagnosed over twenty years ago with hypermobile EDS (hEDS). For years, we have dealt with many challenges EDS has brought. For most of those years, we
Dominique has classical Ehlers-Danlos syndrome (cEDS), and shares her poem of life with EDS. Meet Ehlers-Danlos syndrome A rare connective tissue disease An unwarranted friend Bearing gifts of soft skin
Hi, my name is Megan. I’m 30 years old and was diagnosed with hypermobile EDS (hEDS) when I was 14 years old. I’m a barber by trade, but I had
I have always been very clumsy, ever since I was young.  I wanted to keep up with classmates in subjects, and friends in sports, but I was never quite able
It took almost 24 years for me to be diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). For 24 years I was neglected by my medical professionals. When I finally got diagnosed,
The first sign that something was wrong was my ankles. Anyone walking behind me could see that my feet wobbled as I walked. As a kid, I didn’t realize this
CW: Contains discussion of miscarriage and suicide I have always been a planner. I knew at a young age that I wanted to be a dietitian and fulfilled this goal
Getting an Ehlers-Danlos syndrome diagnosis is an ongoing process that can raise more questions than answers. I had always been ‘flexible’ and had problems with my joints in childhood, but
I didn’t know I had hypermobile Ehlers-Danlos syndrome (hEDS) until age 26. I was born with congenital cardiac defects, and as a child everyone called me “double-jointed.”  I was a
I was diagnosed with classical Ehlers-Danlos syndrome (cEDS) at birth; my mother had it and when her water broke a month and a half early, it was confirmed that I
My name is Gafsa Garson and I am known as Gafsa Bux. I was an operational nursing manager at Groote Schuur Hospital. I started having severe back pain in 2018,
I have been dealing with chronic pain for a long time. I had a long journey looking for answers. I was finally diagnosed at age 49, in April 2019, when
My name is Harry, although diagnosed at 17 and being hypermobile Ehlers-Danlos syndrome (hEDS) didn’t affect me until I had a severe and dangerous prostate infection. This flared up my
TW: Contains discussion of eating disorders I will be 30 years old in October 2020, and I was just diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). Ten plus years ago I
My oldest half-sister was diagnosed with rheumatoid arthritis when she was in high school, and my oldest half brother wanted to play football in high school but his joints kept
I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) in 2018 at age 33. I had at this point had symptoms my entire life (hypermobility, headaches, joint pain, fatigue, gastrointestinal issues,
My name is Julia Brouwers, I’m turning 24 soon, and I live in a small city close to Amsterdam in The Netherlands. I am trying to create more awareness for
What happens in 10 years. I look at this image of myself from 2010 and see the cheerful smile, the chin and shoulder blades with no flab. I remember how
My name is Rebekah. I am a former professional vocalist and theatrical performer. I am a travel expert, travel designer, and marketing manager, mother of three amazing sons, and wife
Little did I know that my flute career path would essentially be stopped in its tracks before I had an opportunity to really get going. By all accounts everything was
My name is Pashondra James, I am 45 years old and from NC. I am the mother to two beautiful angels, Myecia Abri and Aric Isaiah James who passed away
My name is Quinn and I’m just like you. I love to be with my friends, I love to cook, create art, and be in nature. I have a fascination
TW: Contains discussion of drug and alcohol misuse My hypermobile Ehlers-Danlos syndrome (hEDS) story starts from my birth, inherited from my mother, but we didn’t know until six years ago
My name is Harry. I was diagnosed with EDS when I was 17 due to pain caused by extreme hypermobility. However, except for that moment, it never affected me and
My hEDS story is completely intertwined with the story of my oldest son, Smith Elliott (now 4.5 years old). He is the reason I am aware of my diagnosis which has changed my life in a very
Often I find it a struggle to open a gallon of milk, I need help opening jars, and yes, I have become a person who has even taken a knife
After 30 years of the unknown, I finally got an answer. One night my husband was watching Ninja Warrior and heard a story of a woman with this rare condition.
My name is Valerie, you can reach me at the @bendybodyblog! I’m about to be 23 and currently in graduate school, studying for my doctorate in physical therapy! I have
I was diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) when my youngest child was seen and diagnosed. I wasn’t sure if I should be excited to finally know why! But I
I was diagnosed with EDS at four years old after being admitted to the hospital with my ‘healthy as an ox’ brother with suspected child abuse. 2 weeks later I
It would take me hours to tell my story fully. But here is a start.  One day just before Christmas I got up off of my bed and felt excruciating
Probably one of the hardest things for me to do is actually talk about myself. So this is no small task.⁠ ⁠ I am a 49-year-old mother of three grown
Меня зовут Ирина, мне 38 лет. Моя история остро началась в феврале 2018 года из-за сильного стресса. Год я ходила по врачам, которые лечили мены не правильно диагностировав. Боли начались
My name is Isabella and I just turned 22 at the end of May, which is the awareness month for Ehlers-Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD). I was
CW: Contains mention of suicide I always had a slightly odd gait as a kid, was fidgety, and always uncomfortable sitting in chairs while in classrooms. Labeled as a hypochondriac
Adjusting expectations of myself has been the hardest part of coping with EDS. Just like many people with Ehlers-Danlos syndrome, I remember my childhood as a series of hospital, physiotherapy,
I was only 3 when I discovered how bendy I was, and at the time I just thought it was funny. Around age 8 I became symptomatic with joint pain.
TW: Contains mention of suicide. I was 5 years old, excitedly cheering on my mom at her softball game, City Park ball fields, Fort Collins, Co. Mom hit the ball,
Don’t be a wallflower, find what works for you! I used to think everyone had constant aches and pains. My high school track and field team delighted me—I adored being
Hi, my name is Jasmine and this is my story of living with EDS.  Growing up, dance was like oxygen for me, I needed it to survive. I was dancing
My childhood was a blur of activity. I was, in every sense of the word a tomboy, which for that time period meant a rough and tumble girl. I’m from
May is EDS awareness month and I’ve decided to take part in the #myEDSchallenge by writing about my own personal journey.  I am 47 years old and became symptomatic in
TW: Contains mention of suicide. For years, the struggle to find the words to raise awareness for my genetic condition, vascular Ehlers-Danlos syndrome (vEDS), has mimicked the years of working
Bailey’s story from puppy to lifesaver. For 10 years I battled with life-crippling symptoms and dealt with so many dismissive doctors that I truly had started to give up. I
TW: contains mention of suicide. The Tale of the Terrible Tendons I grew up in many different parts of the world but spent most of my childhood years in Sweden.
According to my doctors, I have had hypermobile Ehlers-Danlos syndrome (hEDS) since I was a baby, but I was not diagnosed with it until I was 13.  Before this I
Hello all, my name is Faith. I am 27 years old, my diagnosis journey began in 2017. Feb 13, 2017, to be exact. That morning I was awakened from my
As far back as I can remember, I’ve always had issues. Born with congenital hip dysplasia and constantly falling over and injuring myself with knee and ankle subluxations. As a
I have lived my whole life with Ehlers-Danlos syndrome (EDS), I don’t know what “normality” is. My whole life has revolved around my disability, my friendships, my relationship, and everyday
It took 35 years. I did not learn I had classical Ehlers-Danlos syndrome (cEDS) until about 3 years ago at the age of 35, despite that my symptoms have been
One evening I went to bed. My wife made a comment to me that she had some stomach cramps. I told her I hoped she would feel better and I
Hello, my lovelies! My name is Lori, I’m 19, and I’m the founder of and writer at the blog ‘From Bud to Bloom’. It is all about my journey towards
My name is Tess.   I’m 27 years old and I love life, I really do. Everything about it – people, animals, my pets, our beautiful surroundings, even my mind, and
CW: Contains discussion of self-harm When I was 15, my mother took me to a pediatric gastroenterologist. I had been struggling to keep down food for two years: I had
My story with classical-like Ehlers-Danlos syndrome (clEDS) started from birth. I have always struggled with bowel problems, and I could not walk far or even sit down without my knee
I had spent most of my life so far being very active. I lived to help others. I cared for the elderly, children and disabled. I taught gymnastics for 20
My greatest barrier with Ehlers-Danlos syndrome has been finding my own voice. Symptoms started as a young child with unbearable leg pain at night. Then, in high school, I began
I always knew my feet were hypermobile since I was a teenager, but I had no idea about Ehlers-Danlos syndrome until I was 30. By then, my time in the
I am 80 years old. I was diagnosed with hypermobile EDS at age 50. I participated in an Arthritis Newsgroup (this was years before social media), and a Norwegian girl
There has been a great deal of talk in the press recently about the TV industry and the toll it takes on your mental health, both on and off-screen, and
When I was growing up I was always getting hurt. I remember crying every night because my body was in so much pain. I had endless dislocations and subluxations, not
At age 24, I began having severe body pain after having our second child. My family doctor was amazing! After a thorough exam, he referred me to a rheumatologist. In
“Wait, you can’t have Ehlers-Danlos syndrome… can you?” So, luckily for us EDSers, medical professionals out there are slowly (oh so slowly) starting to recognize the struggle we have with
Hi, my name is Emma and this is my story of living with EDS.  Growing up I had no idea why my legs felt the way they did. My mom
TW: Contains discussion of suicide. I’m Charlotte, I’m 23 and I was diagnosed with joint hypermobility syndrome, IBS, chronic reflux, costochondritis, vitamin B12 deficiency, and possible pernicious anemia. I was
Recently, I was described by a friend as “the healthiest looking sick person” they knew. It was meant as a compliment, and I thanked them. I may look like a
I was diagnosed at 42 but all the signs were there from the start. As a child, I would sit in the ‘W’ position, I would often stand with my
For the time being, my hypermobile Ehlers-Danlos syndrome (hEDS) has me reliant on mobility aids. My hEDS is typically quite invisible. Well, aside from that time my brain swelled and
For my whole life I struggled with building strength, keeping up with peers, and not understanding why movements look so different when I do them compared to others. As an
I was diagnosed with hypermobile-Ehlers Danlos syndrome (hEDS), Postural orthostatic Tachycardia syndrome (PoTS), and related comorbidities when I was 20. It represented the culmination of six years of searching for
Today, I spent hours on the phone with the pharmacy about a single prescription. This particular prescription has been problematic ever since my doctor first gave it to me. My
In my 30’s I started to develop significant pain in all of my joints, but mostly stemming from my spine. When I got pregnant at 31, I started to have
How many times have you been told you’re crazy? Getting diagnosed with Ehlers-Danlos syndrome is difficult enough, but EDS brings along a bunch of other issues that can make your
My mother and I were diagnosed in tandem. My mother was 39 but looked 19, living a life in chronic pain with constant joint instability. I was 6, and sitting
For years I have had pain in my joints, especially in my hips, knees, and hands. I struggled with fatigue all my life. Xrays and much blood work were done
Finding appropriate healthcare has been a nightmare. Not only do doctors not know about EDS in order to diagnose the disease, they know even less about how to treat the
For years, I was told by my doctors that I was healthy, and I certainly tried to be. I exercised regularly, ate a balanced diet, didn’t smoke, and only drank
I’m Evy and this is my EDS story. I was diagnosed with hEDS when I was 10 years old. Leading up to my diagnosis, my pediatrician was suspicious because I
I am 61 years old, and a little less than two years ago I was diagnosed with hypermobile EDS (hEDS.) I am grateful for all the research on EDS, the
I’m Gracie Anne, this is my experience of living with hEDS. I was officially diagnosed at 13. I’ve had 5 surgeries in a two year time span, 13 hard casts
The irony of living in close proximity to Boston, MA, a city known for its medical advancements, is that with all the world-renowned care I sought, it still took over
I’m Ashley, 34 years old from Canada and living with hEDS, PoTS, gastroparesis, mast cell, and all the lovely things that come with EDS. My story is lifelong and has
I was 19 years old when I was diagnosed with hypermobile Ehlers-Danlos syndrome [hEDS]. This was an extremely difficult period for me as I was also in my second year
Over 10 years of “rest”… Over 10 years of “take it easy”… Over 10 years of “do some yoga and meditate”… Over 10 years of “maybe you should talk to
I used to believe that I was just sensitive to pain and not as strong as others around me. To be truthful, I was average. Compared to my sister I
My name is Alexander VanHouten. I have Ehlers-Danlos syndrome, and though living with pain and constant threat of injury every day is no walk in the park, I am thankful
I’m Sonia, I’m 48 years old and recently diagnosed with hEDS. I recently had to resign from a job I loved. My story is a description of pain, in the
Life has this funny way of telling you things you can and can’t do, over and over again. As a child, we knew something was “off” with the way I
“You just have to learn to live with the headaches.” The doctor looked at me with a complete lack of interest, clearly not caring about what that sentence might mean
My husband has Ehlers-Danlos syndrome. He was the typical case that wasn’t caught until he was older. When he was about 20, he swatted at a wasp and his arm
It all started in my last year of high school. I had suffered from headaches and migraines my whole life, but when I was 17 I got a headache that
Hi! My name is Jada and I am a recent graduate of St. Mary’s College of Maryland currently living in Suitland, MD. I am 22 years old, and when I
My daughter’s previous rehabilitation doctor told us that the same program applies to hEDS as to fibromyalgia. “The pain is between the ears. We’re going to fool you and reset
I have periodontal Ehlers-Danlos syndrome (pEDS). It took 30 years to get that diagnosis. I had good dental care growing up, but had early-onset periodontal disease with bleeding and receding
Myself and my husband have our beautiful daughter, Effie. At one month old Effie started to vomit and sleep all day: we took her to the GP and hospital 17
My first symptoms of hypermobility spectrum disorder (HSD) were simple and seemingly harmless. I was super bendy. I could do all sorts of contortions and party tricks. As I got
Before I was diagnosed with EDS at the age of 37, I would have described myself as outgoing, friendly, brave, trusting and strong – but it wasn’t until now, 3-5
My story is like most with EDS. As a young child, I heard “it’s just growing pains” multiple times. As a teenager, my immune system dipped and infection wreaked havoc
After 24 years of searching, countless genetic tests and doctor appointments, I was given my diagnosis of  kyphoscoliotic Ehlers-Danlos syndrome-FKBP14 variant (kEDS-FKBP14). That day, I not only got a name
November 8, 2017, was the beginning of my journey with vascular Ehlers-Danlos syndrome. I label my event as an attack, because it was just that, but I survived the war
My story is truly one of heartbreak and pain. I recently lost my 14 year old son to aortic rupture caused by vascular Ehlers-Danlos syndrome, and that’s how I received
I’d always been hypermobile as a child and used it to my advantage as a ballet dancer, but I was forever in pain and getting injured. We was always told
My mother and father said the moment I was born the doctors knew something wasn’t quite right. I was born 11 weeks early (I decided to make an early appearance)
My name is Sue, and I live in Melbourne, Australia and I have arthrochalasia EDS (aEDS)/Osteogenesis Imperfecta. My diagnosis was confirmed by genetic testing in the USA, and diagnosed by
It has taken a long time for my family to be diagnosed with hypermobility spectrum disorder (HSD). We’ve been told different things by different geneticists, and we have symptoms that
EDS…Ehlers-Danlos syndrome…until a casual conversation in 2016, on the sidewalk in front of my home with my back-yard neighbor, I had never heard of the acronym or the condition. I
I have no idea what it’s like to live with an invisible illness. I’ve never been questioned for using my disability permit, and no one has doubted the pain I
This zebra’s name is Baya. She is passionate, strong and confident and and does amazing things. She is a swimmer, although you can imagine with hypermobile EDS the worry is
Vascular EDS is relentless. Sometimes it’s subtle, but mostly it isn’t. I am a surviving spouse – the love of my life had this relentless disease. During that time my
I’m 66 years old and have vascular Ehlers-Danlos syndrome. Anyone familiar with this EDS type understands how blessed I am as the median life expectancy is 48 years. My vEDS
My name is Reavie and I am 16 months old. My mom and dad had never heard of EDS before they had me, although it turns out my mom has
I’m Spencer, I’m 16 years old, and I have hEDS. I wanted to share my story, because I know that there isn’t a lot of visibility for the men out there
My name is Rachel and I have classical EDS (cEDS). I’ve never been open to anyone about my insecurities about having EDS. I’ve told others that I have it, and
By Liz H. My daughter, Frances, was diagnosed with cEDS when she was almost 2 years old. We feel lucky that we were able to obtain a diagnosis so young,
Olá. Meu nome é Betuel Tiago. Tenho 24 anos e atualmente estou no estado de Santa Catarina mas sou do estado do Paraná no Brasil. Tenho Ehlers-Danlos síndrome subtipo Clássica.
By Caleb H. In January of 2000, when I was 2-years-old I came down with an illness which, contrary to EDS, most of the world has enough familiarity with to
By Nthabeleng R. I was born in a small Southern African country called Lesotho. Growing up I was an energetic child but was referred to as clumsy for the most
By Rachel O. My journey to diagnosis was not an easy one. As a child, I was always in pain. Walking hurt. Running hurt. Sitting hurt. Standing hurt. Pretty much
By Lynley W. Hi, I’m Lynley, and I have vascular Ehlers-Danlos syndrome. I was born club-footed; my feet were almost completely turned around. Doctors told my parents that I would
By Zoey B. I’m the girl who’s always broken. For real. Some kids actually don’t know my name. I’m just referred to as the girl who’s always broken. I mean,
By Hallie W. Hi everyone, I’m Hallie. I am 18 years old, and received my hypermobility Ehlers-Danlos diagnosis last year, at 17. As I’m sure most of you know, the
By Emma S. I was in 8th grade when I first noticed that my pain—my body—is different. During after-school dance, I was coming out of a handstand and my foot
When I tried to dance, I felt like jello and, try as I might, my muscles barely seemed to be working. Sometimes I was physically unable to feel my legs and feet at the end of the night.
I have dedicated my life to EDS awareness, educating doctors and medical personnel at every turn about EDS and vEDS. We must stop that phone call in the middle of the night.
Normally, I read the stories where people were sad to hear this at first, but not me. I was glad to figure out what was wrong with me and I accepted it. I’m glad I’m different, and that I can make a difference to help people in the future who have mcEDS.
Unfortunately, with this procedure, I suffered a suture burst which wasn’t discovered until 5 days post-op, a total system crash, and 2 blood transfusions. But still, in the eyes of my family physicians, “nothing was wrong”.
Finally finding the exact diagnosis was a very emotional day. I was expecting hypermobile EDS, so finding out it was aEDS was scary. I had never heard of it.
I would be lying if I said all was always ok. It isn’t, and there are times when I despair and my back causes me so much pain that I don’t know what to do with myself. However, I have learned how to adapt my life so that it suits me, and the good far outweighs the bad.
Even with all of this, I struggle daily with pain, fatigue, and the emotional/mental weight of carrying hEDS with me everywhere I go. But I am fortunate to have the resources to access all of my tools.
I saw all these happy, bright, full of potential people with bodies that worked and listened to them and chased the dreams they wanted, and I couldn’t help but feel like my body was holding me back, keeping things from me, keeping me from the world.
I’m here to fight and spread awareness about EDS and how it impacts our lives, family, and any bit of hope there is. I leave my hoofprint somewhere every day so people know I exist! I will not hide!
How could so many things be wrong with me? How could that even be possible?
In May 2017, at the age of 47, I was diagnosed with a hypermobility spectrum disorder. This diagnosis explains my entire life. 
Advocacy is important because knowing? Knowing is everything.
Who knew your legs weren’t supposed to turn all the way backward? Not me. I thought was normal.
They called me a hypochondriac and they called me lazy and they sent me on my way. The worst thing is that I believed them.
My stripes will never get me down!
I am here, three years after my diagnosis, to tell others struggling the way I did that things do get better. The pain and the exhaustion never fully go away, but the knowledge and support that comes with the diagnosis help to push through.
If it was in my head, believe me, I would have told it to go away!
At that time, I discovered that hEDS can be a very lonely and isolating disease.
People say, “hopefully this is your last surgery,” but it’s hard because I know it’s not. I know there will be more. It’s just a matter of time waiting for the next tear or dislocation.
Being able to help others who are struggling in their journey has been a bright light in a dark tunnel. Although I may have Ehlers-Danlos, it does not have me.
My philosophy is that if I live WITH my EDS, my life will be fuller, easier to manage and more joyful.
For many, the winter holidays are a special time, a journey of joy, reflection, reminiscence, and hope. However, as a global community of patients, families, allies, and professionals, we know
I work to prove that people with disabilities are just as capable as anyone else and have a needed place in the workforce. I work to ensure my mother’s hard work on my behalf during my youth was not a waste. I work for MYSELF.
We discovered similarities in thinking, values, and the invasions of our bodies by unknown forces. It was cathartic and validating.
The hardest thing about being a parent with EDS is that there is no hiding. When all you want to do is curl up in a dark corner and be alone with your problems, you have little people depending on you.
Like all zebras, I look younger than my age and hear the usual, “but you look so healthy,” and, “how can you have a disability placard because you can walk without a wheelchair?”
It feels like the day after the flu…not quite mid-flu but not all better yet either. Every day without an ER trip is a victory.
I tell you this as a person who has never wished to pace herself that we sometimes need to take a step back and look at ourselves from the eyes of our loved ones.
What those around me don’t see is my daily, chronic internal struggle.
For Pain Awareness Month 2018, we asked our Ehlers-Danlos Society community: “What was your earliest memory of EDS/HSD-related pain? How old were you?”
I now believe I am stronger than most because I had to be. It was my normal.
I take pain medications now. Not because I’m weak, and not because I am an addict. I take them because they are a tool to help me fight this disease.
The fear, insecurities, frustrations, and anger that chronic pain brings me can sometimes weigh heavier on me than the actual pain.
You see, that is the hard part of living with chronic pain. It’s always there.
I was asked recently to describe what my body feels with EDS. I described the feeling of being tenderized with a mallet all over my body. Not enough to break bones, but hard enough to leave bruises.
I cried all the way home. I wasn’t crazy, I wasn’t exaggerating. My pain was real and there was a reason for it.
The significance this has had for my life is huge. It is a relief to have all my weird injuries and symptoms explained.
As a child, I struggled to understand why my body is the way it is, and why I could not always participate in the same activities as my friends.
My EDS story is ongoing and complex, as all of our stories are. I am a nurse, a daughter, a girlfriend, a niece, a friend. I am an Ehlers Danlos fighter. I am not invisible. WE are not invisible!
I have a very extensive medical history, and after being diagnosed with EDS, the puzzles pieces fit in and everything makes sense as to why my life has been the way it has been.
Every time someone says my story has helped them, it makes my pain easier to deal with.
Pain, bendiness, dizziness, inability to shower; all of those traits were summed up by adults as “moody”, “whiny”, and “lazy”; words that are now directed toward me by those who wrongly judge this book by its cover.
Life with EDS is so incredibly hard. We are given these amazing talents and basically told we can’t use them.
I would love to help those with EDS understand that they are not crazy, their pain is real, and that they are the unsung heroes who wake up every day dealing with this chronic disease with no cure.
With a correct diagnosis, I thought I would be believed, I thought doctors would be willing to help, but that didn’t happen.
You’ll stare at me and wonder why I don’t move as though you do
I recently hiked 2 miles up a mountain without support. This is just another mountain I have to face.
This diagnosis has not served as a means for my defeat, but rather provided me with the strength and wisdom to continue down this path life has created for me and to see just how far I can make it in this world.
When you’re in that much pain, the word “normal” is horrible to hear, because I’m not, and I want answers as soon as possible.
For however long God gives me on this earth; I would like to make each day count. If I educate just one person a day or even a week, when my time here is over, my family will be able to say she made a difference in at least one person’s life.
Always being one small stumble away from an ER trip is also hard. But having to be cognizant of your significant limitations at such a young age is the hardest of all.
So I fight on like the EDS Warrior that I am. And I will continue to fight and push on until I’m called home! 
I learned to not catastrophize, to moderate and to modify. I learned so much more but most importantly, I learned that I had life. Life in me and life to give others. I just had to figure out how to keep crossing that bridge.
As of right now, I’m glad that, even after 8 years, I finally got my diagnosis. I still have a lot of problems day-to-day, but I’m working as hard as I can to manage my symptoms.
After all is said and done, these are my biggest hopes as a Zebra: to honor Shannon’s life. To never doubt a person who claims something is clinically wrong with them, even if they don’t know why.
I want to share with you the journey to my diagnosis, as well as my experiences of vEDS as a patient but also as a doctor.
Sometimes I wish I had purple and pink stripes all over my skin, or a note taped to my back that says “Hi, I’m chronically ill, please exclude me from (insert list)” signed, with love, by my doctor.
In some ways, the race was a metaphor for how determined Grace is in life. No matter what is thrown at her—rain, sleet, snow, or EDS—she gets through it with a spirit and outlook that is unique to her.
I felt validated, angry and scared. The body I powered through life with was falling apart…literally. Did I just hit my expiration date?
I find strength in my diagnosis, knowing that other people struggle with the same things I do every day, but I can do it with half the energy and twice the pain.
I am a much different doctor now – honestly, I thought I was good before EDS – but I understand the fear and helplessness of having doctors look at you like “it’s all in your head”.
There came a point in my life when I realized that this body belonged to me. I have this body, it is mine to do with it what I please, but it is also the only one I have.
I have a hundred stories about my diagnosis, my dislocations, my inability to take meds, my stabilizer braces, but today, my story is about having that one friend who keeps you going when your body won’t go anymore.
The room was starting to spin. When did I get sick? How long had I been in pain? Was it… always?
This was the card I was dealt. Sure, it might not be the easiest card, but it’s doable. I can survive this. And I will survive this.
This brought my illness into full focus for me. It showed me just how easily I can get hurt doing my job.
I have spent my whole life trying to be what I thought was “normal.”
Over the past five months, I have powered through the pain. I have continued to make the most out of my abilities. Just three weeks ago I had the surgery to remove my broken hardware. I am excited to no longer be known in my school as “the girl with the broken back.” I know that I am resilient, that I am capable of anything I imagine myself to be.
Looking back through the lens of having a disability, much of the suffering that I have experienced over decades now makes sense.
I cried in the doctor’s office, not because I learned that I had an illness without a cure, a genetic disease, that I will have to deal with my all life. No no, I cried because I wasn’t crazy. It wasn’t in my head!
Today at age 39, I spend most my time just managing pain, looking for answers for a better quality of life and trying to figure out what to do with the rest of my life. EDS has taken so many things away that I truly enjoyed it’s hard to retrain the brain into finding new hobbies and things to enjoy. When every single moment of every day is painful it takes the joy out of even the little things in life.
I listen to what the doctors say but none of it is “real” to me right now. I asked my mom what it means to dislocate something. I didn’t like how it sounded at all but it’s all just words anyway. But, I do think I’m starting to understand my body a bit better. Even if just a little.
My name is Jimmy and I’m currently a freshman in college studying management of information systems. When most people look at me, it’s hard to tell that I struggle with what could be classified as an “invisible disorder.” And yet, as I’ve since discovered, EDS and my associated conditions are all the more real and important.
Thanks to a great community of other Zebras sharing their experiences and talking to me about my worries the hopelessness has been getting much better. They can’t fix me but at least they help me look on the bright side and make me feel like I am not alone.
I educated myself. Research on EDS, pain management, and diet. I went to conferences. I visited doctors. Slowly I built a plan to manage my life and continue to be a high-functioning individual. I started taking a medication for sleep and realized I hadn’t had a full nights sleep in years. It felt so good to sleep again!
I had to apply the same determination and perseverance that lead me to accomplish so much, well ahead of my peers, to my medical care, while fighting for an explanation for my life-altering and debilitating symptoms.
We went to my paediatrician that same day. And just like that, my bubble popped. “If you had Ehlers Danlos Syndrome, we’d know.” He set aside my printed research and dismissed me. “We know something is wrong, and most likely everything that’s happening is connected, but we’ll probably never really know what it is.”
I might need to change or cancel plans, make a different meal than I intended, take leave from work to have surgery, or change my lifestyle completely. The only way to survive these frustrating and sometimes devastating events is to continue to be flexible and adapt to my circumstance.
I am a rigid rule follower, unforgivingly strict about the outline of my day, and a very self-driven entrepreneur. Look, I’ll be honest; everything is great as long as everything goes exactly as I have planned it. This is why, perhaps, that my recent diagnosis of EDS completely turned my world upside down.
by Matt Smith Since being diagnosed back in 2013 with vascular Ehlers-Danlos syndrome, there has been a constant internal conflict of whether or not being diagnosed with a life-threatening, rare,
“Vascular Ehlers-Danlos syndrome is a killer, a silent assassin that has the power to take away a life in the blink of an eye. It is no joke. There is
Oklahoma mother and daughter receive rare disease diagnosis from NIH only to find they are alone with their specific genetic mutation of painful and potentially disabling form of Ehlers-Danlos syndrome.
My fellow zebras, My name is Larry Constant Jr. and I am 32 years old. I am a professional Audio Engineer and owner of an A/V Labor and Consulting business,