In case you missed it or it wasn’t overly obvious by the title of this post, May is Ehlers-Danlos Awareness month – a month when all of us zebras come together and celebrate our wonkiness and rareness, whilst spreading the word about what EDS actually is.
Throughout April, I asked people for their help in putting together an awareness article about what EDS actually is, how we felt when we were diagnosed, whether that diagnosis was easy to come by and what we would like people to know. I would like to say a huge thank you to everyone who has contributed to this, quite simply, it wouldn’t have been possible without you.
Ehlers-Danlos syndromes (EDS) are a group of rare inherited conditions that affect connective tissue. Connective tissues provide support in skin, tendons, ligaments, blood vessels, internal organs and bones.
The different types of EDS are caused by faults in certain genes that make connective tissue weaker. EDS can affect people in different ways. For some, the condition is relatively mild, while for others their symptoms can be disabling. Some of the rare severe types can be life-threatening.
In total, there are 13 types of EDS:
- Classical EDS (cEDS)
- Classical-like EDS (clEDS)
- Cardiac-valvular EDS (cvEDS)
- Vascular EDS (vEDS)
- Hypermobile EDS
- Arthrochalasia EDS (aEDS)
- Dermatosparaxis EDS (dEDS)
- Kyphoscoliotic EDS (kEDS)
- Brittle Cornea Syndrome (BCS)
- Spondylodysplastic EDS (spEDS)
- Musculocontractural EDS (mcEDS)
- Myopathic EDS (mEDS)
- Periodontal EDS (pEDS)
So that’s the technical side out of the way, this is what we would like you to know about life with EDS.
“When I was diagnosed with EDS, I was overwhelmed and felt this weird combination of relief and disbelief. Here was a legitimate answer to problems I had been having since I was a baby, they weren’t all in my head. It was real. I am a textbook EDS case, but no one had caught it. This showed me how little medical professionals actually knew about my genetic disease. I also couldn’t believe that EDS doesn’t have a cure or a specific treatment. I was overwhelmed with the fact that I would be dealing with these things for forever. I was fifteen when a doctor told me I had EDS, but my definitive diagnosis came when I was sixteen. I became wheelchair bound exactly a year before my definitive diagnosis came, but the word EDS was never even mentioned to me until 8 months after I became dependent on the chair with every doctor telling me that nothing was really wrong. If I had known about this underlying condition, I would have avoided tearing out my joints at such a young age. The major damage came after I was misdiagnosed with conversion disorder by a hospital who refused to do testing or examination and insisted I was crazy. I was put through 6 hours of intensive physical therapy everyday for a month, and left the facility answerless and in a wheelchair, which I have been confined to ever since.
What I want people to know about EDS is that it may not always be visible, but it’s real. It’s not anything you choose and not your fault. It’s not just a joint problem; it’s an entire body problem with co-morbidities and constant pain. Your life doesn’t have to always revolve around your sickness; you can have friends and family and hobbies. Your illness will affect your life, sure, maybe even every aspect of it. Find doctors that empower you, are knowledgeable about your condition, and are committed to helping you feel better.” Ella
“When I received my diagnosis from my geneticist, he talked for an hour about all the other health issues that can go along with EDS, such as gastrointestinal issues, dysautonomia, heart problems etc. He ended the appointment saying that I was going to be getting care to benefit my quality of life, not curative care. It was crushing to hear that I would deal with this forever. I was SO overwhelmed.
EDS affects everyone differently. It can be severe for some and not for others. Keep in mind that everyone with EDS struggles with different things.” Emma
“The one word that comes to mind about receiving my EDS diagnosis is relief. I was so relieved to finally know what was going on with my body, and I was happy to have proved so many doctors wrong because it wasn’t “all in my head.” At the same time, I was scared because my diagnosis meant I had a progressive, lifelong illness. From the start of my prominent symptoms, it only took me a year to be diagnosed. I am very lucky. However, I have had some symptoms since as long as I can remember because you are born with EDS so technically a diagnosis took 15 years. If I could tell the world anything about EDS, I would say that it’s not just EDS. Stereotypically, EDS affects the skin and joints, but the truth is, our faulty connective tissue is everywhere, and it affects everything. Many of us have debilitating comorbidities. I, for example, have several allergic reactions a day and I get violent shaking from a lack of proper blood flow. And that’s just skimming the surface.” Allie
“As a child, I was always very flexible and my joints cracked a lot but most of my symptoms started three years ago: pain subluxations, strokes, tachycardia, malaise, sleep disorders plus more. If was a relief for me to have a name. Five months laters and it’s a little harder to say that this will be my life.” Ophie.
“I was lucky that I was diagnosed when I was 10. As I was so young the diagnosis didn’t really mean much to me. It meant a lot to my parents though. Before my diagnosis I had been accused of attention seeking, my mum had been accused of having Munchausens and making me ill. My parents had also been accused of physical abuse because I was always injured. I was then told that I possibly had leukaemia and bone cancer so actually getting a final answer meant the world. A diagnosis also meant that I could finally get some help for the constant pain I was in.
I wish people took EDS more seriously. Just because I look healthy doesn’t mean I am not in agony. I’m also not lazy, my body just won’t let me do certain things” Beth
“When I first got diagnosed with Ehlers Danlos Syndrome I felt so happy that I cried. That may seem strange to some but for the first time ever my symptoms weren’t “all in my head” and my doctor had an idea of what could help me instead of the usual “I don’t know what else to do” answer. I was diagnosed at the age of 25 but I had many symptoms my whole life that were worsening. I would like people to know that EDS effects more than just joints. It can effect the organs to make them not work properly and can worsen in time if not taken care of.” Amber
“When I was diagnosed, I was so relieved. I finally felt like I wasn’t faking it. It took 16 years to get a diagnosis, I had symptoms as a baby and it just got worse, until I was diagnosed at the age of 16. I would just like people to know that EDS exists. It’s hard to get the people who love you to accept it as a real thing.” Anon
“I started getting symptoms when I was 11 and hit puberty…over 10 years I became more and more unwell with other symptoms, as well as EDS. I was bedridden for months and housebound for years, with the NHS telling me that it was chronic fatigue and fibromyalgia. I had various forms of intervention but nothing worked.
When I was officially diagnosed, I was super relieved just to have a name to what was going on. Having a diagnosis allowed me to create a health plan and feel more positive about things.
I think that it’s important to raise awareness about EDS and how hard and vague the diagnosis process is. Most of my doctors hadn’t heard of EDS, so I had to educate myself.” Alice
“When I first got diagnosed with Ehlers Danlos Syndrome I felt so happy that I cried. That may seem strange to some but for the first time ever my symptoms weren’t “all in my head” and my doctor had an idea of what could help me instead of the usual “I don’t know what else to do” answer. I felt heard and my symptoms made sense. I was diagnosed in Oct 2017 at the age of 25 but I had many symptoms my whole life that were worsening. I would like people to know that EDS effects more than just joints. It can effect the organs to make them not work properly and can worsen in time if not taken care of” Amber
“Being told that I have EDS was life changing. Before that, I was constantly accused of pretending to be injured and as a family, we went through a few months of my parents being accused of hurting me. No one believed me when I said that I didn’t know how I was injured. People still find my situation hard to understand but I don’t worry as much now. I want people to know that EDS is real.” Jack
“I was symptomatic for about 3 years before I got hEDS diagnosed. It took 2 more years to find a good team of doctors to treat it and get various other things with it diagnosed. I got really symptomatic at age 18/19 and got diagnosed at age 22. I’ve been symptomatic my entire life though. All I felt was relief and frustration that it was missed for so long. I want people to know that well-managed EDS and co. Isn’t a death sentence. I often barely notice it unless I’m in a flare-I have done a lot of work to get this far. Keep working with your doctors to get a good treatment plan, you can live a good life if it’s well-managed. Also don’t be afraid to get new doctors if you don’t agree with how they are treating you-long term it paid off greatly. You got this!” Kathryn