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 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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
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 […]
The first time I went to a doctor to try to determine what was causing my pain and fatigue, I was 14. The doctor identified my mitral valve prolapse but, other than that, he deemed me to have been perfectly healthy. I didn’t aggressively pursue a diagnosis, I just knew my neck and back hurt […]
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 […]
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 […]
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 […]
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 […]
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 Shaun R. I was really unsure about writing this, but I’ve noticed there’s not a lot of men telling their stories. If this helps anyone to feel a bit better then I suppose it was worth it. I also wanted to do my part for spreading awareness of EDS because, as we all know, […]
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 […]