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.
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 […]