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.
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 Ehlers-Danlos syndrome (hEDS) in December of 2016 at the age of 19.  I wanted to share my story because there is a lot of fear
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 myopia and amblyopia and spent my teen years feeling unattractive thanks to scoliosis and dental overcrowding. Every year, it seemed like something new. My 20’s
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 function and successful medical treatments to an early diagnosis. As a physician assistant myself, I personally know what it is like to be on both
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 it was there. I was the clumsiest kid ever and had belly aches. I started having symptoms that I noticed when I got stationed in
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 the signs of EDS were there in my childhood, we just didn’t recognize them. It’s been a very long, hard journey, and there is so
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 limber or “double-jointed”. I could dislocate my shoulder almost on command. I could fold into a human pretzel and touch my hands flat to the
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 third year of college and was studying pathology. As I read a short paragraph in a long textbook about EDS, I knew right then
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 teach English. I love art, music, cooking, and helping others, especially children. But not everything is right…. I am a medical zebra. I have
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 a dissection in one of my vessels. This would open up a study in Halifax Nova Scotia, with many doctors, and with the results of
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. For most of my life, I have pushed through lots of widespread joint pain and inflammation while thinking this was normal. Beginning at eight years
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 can complete 200 steps in a single day. I was diagnosed with fibromyalgia in 2017, it is a chronic condition that inflicts widespread pain, fatigue,
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 career, I pushed through but I was in continuous pain. The mental aspect of being injured was, in my case, far worse than the physical
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 contact with to this day! I wasn’t diagnosed at this point as my difficulties were all down as psychological, but I did have my PEG
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 am in constant pain every day and nothing can be done to fix it. It makes me miserable and I feel weak when I can’t
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 very often, and very fatigued. I was always going to the doctor, ER, or school nurse. But every time they found nothing. Chronic illness runs
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) 3-9 times a day, and sometimes persists for hours or days. The minute I wake up, I have ringing in my ears, I am dizzy,
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 are mad. Our brain is foggy, our joints are sore. When we stand up, lightheaded, we think we will fall. Heart palpitations, blood pressure drops
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 awareness. I have hypermobile EDS (hEDS) formally known as EDS type 3, Chiari malformation, and polycystic ovary syndrome (PCOS). My hope to inspire someone with
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 little, I have practiced all kinds of sports, but as a good zebra (hEDS), I repeatedly injure myself. Sadly, finding a doctor who handles the
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 being sixteen working at a small local restaurant. I had a regular customer who was in his eighties. I would complain to him often about
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 not easy, especially when I grew up and every other child could play football or some other sports and I couldn’t. “No, Markus you can’t
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 In the port to pub event in WA, Australia. My team helped me achieve something I never thought I’d be able to achieve and I
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 family history (quite different mutations) are positive for Ehlers-Danlos syndrome (EDS). Today I had my check-up, yet another genetic scan because I’m quite peculiar (this
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 go to the toilet by myself), a medical student asked me, “you have Ehlers-Danlos syndrome, right?’ I’d never heard of it. A week later, I
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 and depression, low vitamin D, possibly arthritis, maybe fibromyalgia, anemia, “blackouts and fainting that could be diabetes.” It never was. I received a Dysautonomia diagnosis
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 resemble having a full-time job. Juggling these health conditions not only takes a toll on our energy but also takes up most of our time.
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 no trauma involved. My first shoulder dislocation happened simply by me sitting up in the car while on a long trip. Once in my teens,
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 and said, “I’m being serious”, to which I said, “So am I”. From the outside looking in, I am a 43-year-old British woman living the life in Queensland,
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 the day I was born prematurely.  From that day forward it started, I had five sets of tubes from age 6 months to 5 years.  
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 said to me, “What’s wrong sweetie? You look worried.” I noticed Halle felt floppier than my first two kids. She also had very large gums,
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 a cheerleading accident in my teens, all the symptoms that come along with hypermobility spectrum disorder (HSD) seemed to make matters worse. Symptoms of fatigue,
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. Finally, a foot doctor mentioned EDS which led to her diagnosis of hEDS! It should not have taken fourteen years for a diagnosis. “Tabby, with
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 informed, not treated, not directed to any other medical professionals for further help with my comorbidities and other related symptoms. I was walking about the
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 relation to Craniocervical Instability (CCI). A few facts to start with. I was, what we call over here, ‘double-jointed’, as a child mainly around the
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 I would chat with my identical twin sister then we realized that our pain was very similar.  At around the age of 13, I decided
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, and a theatre and film producer. Since my illness took over in 2008, I have been exploring my creative passions in the art world. I
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 was diagnosed with autosomal dominant polycystic kidney disease (ADPKD), which started my medical decline.  A few months later I started having a lot of pain
I am a 21-year-old female. I was diagnosed with Ehlers-Danlos syndrome (EDS) when I was 6 months old. My father has EDS as well, and he noticed when I fell off a couch that I had a cut shaped as a triangle or as I call them “smiley faces”. He automatically knew what I had
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 what Ehlers-Danlos syndrome was, nor did I know how it was going to affect my life in the future.  I went to college at Christ
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, telling your family for the first time is like, “You’ve got a problem with your ear? – no dad, E-H-L-E-R-S, not EAR!” What the heck
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 the doctors thought I was being abused. It wasn’t until my knees started dislocating as a teen that I was given an official diagnosis. I
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 in that things I can do, I thought were fairly ‘normal’, have apparently turned out to be ‘EDS-things’; such as my ankles relaxing up to
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 age 20. I had never been able to exercise without feeling self-conscious or ridiculed for my lack of coordination or ‘effort’ due to fatigue. But
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. I started noticing symptoms at age 11, but now looking back, I have had symptoms since I was younger.  I would constantly sprain my ankles,
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 called The Wiggles. It said that a founding member had to quit performing due to a rare medical condition. It went on to describe his
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 most vulnerable in my family, half of my life has been in hospitals and medical appointments, everything hurt and I was sick all the time. 
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 has absolutely nothing to do with my condition. Or worse, “words of wisdom”; insisting that my disposition could be improved by simply changing my diet
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, and height, in particular, were things that people would often comment on. Starting around the time I was about 12 or 13, I started having
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 started after a bad car accident in 2019. My body seemed to get weaker and weaker, my joints seemed to collapse in on themselves, and
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 of my history, my geneticist diagnosed me with a connective tissue disorder known as Ehlers-Danlos syndrome (EDS). Not only does this diagnosis account for the
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 and pain, I was only 13. EDS was still widely unknown. It’s hard to reflect back and know that if we had today’s information about
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 both children, bruising easily… the list keeps going and going.  In 2014 I almost died from an internal hernia that had pulled my small intestine
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 was cute. I was the firstborn on both sides of the family, so no other babies to compare to, though little things bothered my young
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 breaks at least two to three times per practice. I also noticed I was extremely tired a lot of the time, more so than most
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 dream). Still very unsure which letters to use as I am perplexed on what words to even begin with. Never have I felt so vulnerable
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 old after a major sports accident. The accident caused a patellar dislocation with a torn meniscus, a slipped disc in the lumbar section of my
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 illness and it can feel like an impossible life. How can we possibly keep all of the moving balls in play? I dropped my juggling
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 all of us.  After years of daily headaches (from the time she could express herself in words), “growing pains”, progressive bilateral leg deformities, and finally
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 and felt like I was on the cusp of life. By the age of 26, I was almost bedbound. With each new ailment that was
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 lots of activities including wheelchair basketball, wheelchair track/road racing, rock climbing, yoga, etc, but track has my heart. I started experiencing symptoms as early as
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 as a result of Cerebral Palsy and severe intellectual impairment, I became grounded very young and was raised to never take anything for granted. However;
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 experiences they’ve had in their lives or been part of through the lives of those close to them. While not always the case, I have
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. You are too medically complex.” It’s disheartening when the people who are supposed to help you, can’t. When you are told this news by a
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 the army’s way. ⁠ ⁠ I always had issues growing up but never could find a reason for my pain and joint issues. One day,
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 sight. I was diagnosed with classical EDS (cEDS) in 2019. In 2016 I had a hospital admission that seemed to bring all of my EDS
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 have been able to live a pretty normal life, albeit with limitations and strong medications. We have owned and rode horses for most of our
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 and dislocated knees. It comes to the door more often than not When you’d rather spend time on some other thought Sometimes its a knock,
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 to give up my passion and my job one year ago, due to it being too physically demanding. My hips and shoulders constantly dislocate. Every
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 to, nor sure of why. I always wondered if it was because I was the youngest of four siblings. Did I not get enough vitamins
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, I was not sad, it came like a blessing to me. I felt a big relief because I was seen, heard, and believed. I was
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 was wrong, and I thought that everyone’s feet hurt after walking for 15 minutes. I went to the doctor, and they told me to get
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 through hard work and dedication. I married my first love and I was the first of my friends to marry and the first to have
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 my flexibility was encouraged and any pain was brushed off by doctors as ‘growing pains.’ As a child, I briefly participated in dance and gymnastics
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 very sports-involved tomboy covered in bruises, ace bandages, and casts, and suffered dislocations, ligament and tendon tears, sprains, and strains. I was always fainting with
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 had it too.  As long as I can remember I’ve been in and out of hospitals with some new injury or joint issues. Each year
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 saw a neurologist and an orthopedic doctor, as I was also complaining of severe pain in my hands. The neurologist sent me to a
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 a genetic test confirmed classical Ehlers-Danlos syndrome (cEDS).  When I was little I remember the pain in my legs and feet after any activity, and
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 EDS. It was my bladder which EDS hit hardest first. I began retaining urine because my bladder muscles were not able to work, but I
“Hi, I’m @uniquely_jeantique and for Urology Awareness Month I’m going to tell you a bit about my bladder journey! I have hEDS and bladder complications are one of the many comorbidities I struggle with, but for years I was told I “just” had interstitial cystitis and was dismissed by doctors who didn’t take any of
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 fell ill, and never got better. I had no idea what was wrong with my body. I was a professional cross-country skier for the Junior
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 dislocating. The doctor said it was because he was growing too fast, that he should drink a quart of milk each day and not play
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, autonomic intolerance etc.), but no one had pieced together my jigsaw. In 2015 I was pregnant with my first baby. I had a very difficult
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 people with disabilities. I recently wrote a small post about having a disability in the business world and unexpectedly it has been viewed over 1.38
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 I managed the set up and hauling of all my things to the Riverdays festival alone. The gardening I tackled. The standing and selling of
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 to the most supportive husband in the world. My life was going pretty well until seven years ago. We were in a car accident. Our
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 in place. I was all set. I had the best teachers. I was at my dream school of music. I made it! I am a
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 at birth due to EDS related complications. I did not know until 2011 that I was fighting a genetic illness called hypermobile Ehlers-Danlos syndrome (hEDS).
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 with decorative skulls and an obsession with collecting flavored chapstick. I have lived with chronic illnesses my whole life. I was born with a urea
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 when I was finally diagnosed. My mother expected as much, being diagnosed around a decade ago. Growing up we faced our fair share of hardships.
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 I led a good life. At 31, I had just married the most amazing person, we had bought a house and I was thriving in
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 profound way! From the time Smith was 12 months to 2.5 years old, we spent a lot of time in and out of the pediatrician,
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 to a juice carton. My body is just plain weak, and it’s getting weaker. But it’s in this weakness where I find my strength. I’ve
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. This was after years of going to doctors and him coming home poking me to see if certain things hurt when he finally got the
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 Ehlers-Danlos syndrome (EDS), Postural tachycardia syndrome (PoTS), celiac disease, chronic migraines, eczema, asthma, and suspected Mast Cell Activation Syndrome (MCAS). Throughout my studies and activities, I
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 was scared for us both. I bruise easily, will be 50 in several weeks, and live in constant pain of some degree. My hip and
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 was discharged with a diagnosis of classical Ehlers-Danlos syndrome (cEDS), and next to no information. My mother (no history or diagnosis) then studied to become
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 pain in my knee, I went to the emergency room and because I could still move my knee they sent me home. A few months
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 children ages 25, 28, and 33. I’m also a Grandma of a 7-year-old girl and twins, a boy and a girl age two. My husband
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 в области ВНЧС и распространялись на зубы. На очередном визите у стоматолога я получила вывих ВНЧС. В феврале 2019 мне сделали хирургическую операцию на ВНЧС.
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 diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS) back in 2014 and last summer I got the confirmation of my diagnosis based on the new evaluation criteria
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 by my father’s family and told how chubby, weak, soft, and attention-seeking I was; regardless of having 2 sets of tubes in my ears and
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, and orthodontist appointments. I was forced into wearing kids’ Birkenstocks and doing foot-strengthening exercises I never really liked. It wasn’t until my mid-teens that the
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. My GP told me that ‘it’s just growing pains’, ‘it’s weak ankles’. I gave up and accepted the pain. At age 12 I started getting
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, I jumped and cheered with the others in the bleachers, slipped and fell through the bleachers, and life changed. Climbing back up, lifting my pant
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 part of that group! But running hurt my knees and my back. I had a whole box filled with braces, aces, and splints. So instead,
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 six days a week by the age of 9 and dance was my passion. I was constantly told by my dance teachers that only weak
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 a small town in Kansas, and my grandparents lived on acreage there. My happiest moments were spent feeding chickens, gathering eggs, caring for horses, picking
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 the 1970s with a collapsed bowel, resulting in various visits to children’s wards at both St Thomas’ Hospital in London and my own local hospital.
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 through speech therapy, as my family tried to decipher the tongue-tied soliloquy I called talking. A million details scrambled together, just enough to make it
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 had to go to a doctor purely by chance due to a chest infection that couldn’t shift and I reluctantly went to a new doctor.
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. That is where my story begins! I was an avid athlete and loved football. I loved being active, and I was darn good at it
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 pretty much lived a normal childhood, hanging out with friends both in and out of school, shopping, cinema, and much more. I was, however, very
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 sleep with really sharp pains in my stomach. I thought it was just the normal gastrointestinal issues I normally live with, being that I was
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 child, this was treated like a party trick by my GP, and eventually, I was told to stop these tricks. I pretty much always remember
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 life. Growing up, I was always that odd one out because of my disability; I had to wear special shoes at school that mostly got
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 present my entire life. My mother started taking me to the doctor when I was four, she was concerned because I was not growing or
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 went to sleep. Around 4:30 AM I woke up with this awful pain right below my ribs directly in the middle of my abdomen. 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 self-love and self-fulfillment as someone with chronic illness and mental health problems – I also happen to battle with hEDS, PoTS, ME, scoliosis and hip
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 body… of which my body is pretty defective. When I was 15 years old I hit puberty and my life was shaken up. I always
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 been diagnosed with gastroparesis and I had started to struggle with body dysmorphia.  When the Gastroenterologist came into the room, I was pulling at my
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 caps popping out of place. At the time my doctors and physiotherapist did not know what was wrong with me. I  spent time in Great
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 years. Now the tables are turned. It’s me who needs the care and I struggle with this new role.  It feels foreign to me, this
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 having many gastrointestinal issues. I still wanted to participate on my school’s cross country team; one day while running alone I lost consciousness. Once I
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 military had worn away my lower extremities.  I had my first foot fusion at 22, but it wasn’t until I developed dysautonomia and postural orthostatic
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 reported that she had just been diagnosed with hypermobile Ehlers-Danlos syndrome (hEDS). She listed her symptoms and the lightbulb moment happened. She was talking about
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 how the industry would shut down as we know it if all the freelancers walked out. There is an element of my journey that I’d
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 to mention my PoTS and other issues that EDS has given me.  No amount of pain medication and ice packs could mask my excruciatingly painful
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 no time, I had a diagnosis of hypermobile Ehlers-Danlos syndrome (hEDS).  After listening to my entire history of being a dancer as a child, always
“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 this chronic, genetic, faulty collagen, pain-fuelled condition. Many don’t understand it, some even deny its very existence, but a few have embraced the need for
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 has multiple sclerosis and one of her symptoms is that her legs are very painful, so when I was little I would tell my parents
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 originally diagnosed with ‘probable fibromyalgia’ when I was 16 years old. At the time I was told ‘you will probably grow out of it’ and
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 fit and well twenty-two-year-old woman, but in actuality, I am living with a disorder that consistently causes pain and hinders my life.  It wasn’t until
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 feet completely flexed so all the weight was on the outside ankles, I could do splits both ways and I got very tired walking. In
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 1/3 of my hair temporarily fell out. Oh EDS comorbidities, you are full of surprises. No worries, I combed it over and it grew back. 
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 adult, I now know what Ehlers-Danlos syndrome is: suddenly everything makes sense and the questions have been answered.   When it came to my muscles, they
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 answers to explain my complex symptom presentation and the reason for a lifetime of recurrent pain.  After such a tumultuous diagnostic odyssey, it was also
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 insurance company has refused to cover it, my pharmacy fights with me every month about it, and I am ashamed to tell people that I
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 excruciating pain in my back. I went to physical therapy and was told it was normal.  At 36, I had my first spinal surgery, a
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 life hell. Throughout most of my life I was always told nothing was wrong with me when I had an injury. Something would hurt, I
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 in the doctors office in a W banding my fingers backwards so my hand looked like a skydiver. In the 23 years that have followed
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 every year, looking for signs of Arthritis. My fatigue was chalked up to me being a “lazy kid” and then teen, and then my being
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 symptoms. My daughter was hospitalized and later diagnosed at the beginning of the opioid crisis (2017). Because of the new rules they “could not treat
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 occasionally. However despite all this, I didn’t feel healthy. For five years, I had been experiencing migraines, weight loss, nerve pain, chronic pain, loss of appetite, fatigue, hair loss, gastrointestinal, urological and
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 had some symptoms such as scoliosis, Idiopathic Thrombocytopenia Purpura (ITP), hernia, flat feet, flexible joints, digestive issues, etc. It took a few years, but 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 informative resources available on The Ehlers Danlos Society’s website, and the prompt answers to all of my questions. It’s tremendous to not feel alone. I
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 and numerous braces. The number of dislocations is astronomical, the broken bones and torn ligaments were never ending. Doctors didn’t know what to do with
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 15 years to finally have some answers. My name is Victoria, and I am a 26 year-old full-time Doctor of Pharmacy candidate in an accelerated
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 been physically and mentally draining. As a child I had many EDS traits that caused me problems, but I did not know at the time
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 of university studying for my BA Honours in Early-Childhood Studies. I was fortunate to have a smooth diagnosis; I was examined by a rheumatologist who
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 someone”… Over 20 years of doctors shrugging me off with comments like “you’re too young and healthy to have issues”…”it’s just tendonitis”….”you’re a dancer, it’s
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 was miles behind her in athleticism and energy, although I would attempt to keep pace in all walks of my life. I started noticing health
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 for the trajectory my life has taken because of this disease. When I was a child I was, like most young boys, a hyperactive, rambunctious
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 hope that others who also haven’t found effective management can relate. It’s possible I began experiencing pain before I was old enough to remember or
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 acted, walked, and did other activities, but we weren’t quite yet at a stage where we could pin point what it was. As I began
“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 for a 20-something trying to adjust to adulthood as a firefighter/paramedic. I had spent months trying to ignore the pain, overcome the balance problems, and
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 dislocated. The surgeon that did the surgery knew there was something more going on because of the severity of the tips and tears. It was
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 wouldn’t disappear. I went to doctors, physiotherapists and dentists: they treated my with acupunture and tried to pull my teeth out. The first tooth split
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 was 13 years old, I was diagnosed with EDS by Dr. Francomano after a grueling year of ER visits and hospital stays. More recently, 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 your brain. Your brain sends the wrong signals and we will treat that.” Because I did not agree with the rehabilitation doctor, I was almost
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 gum tissue. At 24, I lost a lower front tooth. Despite attempts to surgically repair the surrounding tissue to try to save the tooth, my
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 times within the first 3 months of her life. One morning, 3am Effie woke up screaming, she had a seizure and turned stiff: we called
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 older however, each year came with more problems. By age 10 I was having chronic nausea, and by age 11, my first symptoms of Postural
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 years after being officially diagnosed, that I consider I truly know what these words mean. I wanted to be resilient and courageous, pushing healthy boundaries
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 on my body. It wasn’t until a virus came a few years later that left permanent damage. I was diagnosed with hypermobile EDS (hEDS) in
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 for the condition that plays such an immense role in my life, but I got a tool: I got a name, a word, to help
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 this disease has started with me. My attack caused both of the arteries in my kidneys to dissect, along with a couple of aneuryms throughout
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 my diagnosis. By this time I did already have two siblings diagnosed with vEDS, so we already knew there was a possibility of having it.
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 by doctors that it was just growing pains and “double jointedness” is common in children. I then moved away and started university. Whilst I was
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) by emergency c-section. I’m a fraternal twin, and I was born with congenital bilateral hip dysplasia and a collapsed lung. They didn’t really give me
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 The Austin Hospital Genetics Department here in Melbourne. I also have a very rare anyuresum, growing since birth called a Dehiscence High Ridding Jugular Bulb.
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 aren’t attributed to HSD. One of my brothers, my mother, and myself have also all been diagnosed with Hashimoto’s disease. It proves extremely difficult for
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 had recently suffered full ATFL and AITFL ligament tears in my right ankle, from a typical walk from the mall to my car. Being in
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 was in. A hidden blessing for a very visible disability! When I was born 8 weeks premature by emergency caesarean, the doctors and Mum and
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 there that something will happen. While she is super flexible, acid reflux is her huge hurdle. She has struggled since she was born with reflux.
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 dear husband’s body was attacked by an invisible enemy. There were major events, a spontaneously ruptured spleen, gastric aneurysm (where he was an early recipient
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 life began 22 years ago, although I didn’t know it at the time. On Christmas Eve in 1996 I began having abdominal pain around 6:00pm.
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 it too. We knew something was up when at 6 months, before I was crawling or even rolling around, my arms were covered in bruises.
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 with EDS. My symptoms started when I was 6 years old. It started out as pain and instability in my ankles and knees, which was
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 explained what it is in a very objective way, but I never dwelt deeper than that. Searching ‘EDS’ in Instagram was shocking to find so
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, knowing that many EDS patients spend much of their lives trying to figure it out. It’s possible that we also would have been in the
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. Possuo muitas cicatrizes em meu corpo, a maior parte deles aconteceram na infância e ficam marcas para vida toda. As vezes saem feridas em meus
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 despise: the unfortunately common, unpleasant, but benign wintertime stomach flu. And common, unpleasant, but benign is how it should have gone. But, ironically, this common
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 part of my childhood and at some instances, ‘lazy’ for I got tired a lot which now I know I experienced a lot of fatigue
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 anything you can think of hurt. I never really knew why, I just knew that no matter what I did the pain didn’t go away.
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 be in a wheelchair for all of my life. I am happy to say I am not in a wheelchair! I’ve had multiple surgeries and
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, for them it probably seems like it. My whole life I was always very flexible, doing weird things with my body other kids couldn’t do.
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 feelings regarding an Ehlers-Danlos diagnosis come in phases. I felt the extreme relief at having an answer, and verifying my sanity. I felt the “I
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 got caught in my pant leg. I fell on my chest. Everyone came over to ask me if I was OK. I said, “It’s only
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 the challenges of the Ehlers-Danlos syndromes and hypermobility spectrum disorders firsthand. Yes, for those of us living with EDS/HSD, the winter holidays can be particularly
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, genetic, incurable condition, is a good thing or a bad thing. The fear and anxiety caused by the knowledge that you have this condition that
“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 no cure and no real treatment. It is relentless. It doesn’t just affect individuals, but it affects whole families, often taking the lives of multiple
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. BALTIMORE, MD USA — When Oklahoma teenager Whitney Silver began experiencing severe joint dislocations and chronic pain in 2013, it only took three months for
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, NOLAV L.L.C. I share my life with my beautiful wife Carly who is a Registered Nurse and our furry son Winston, who is half bassett