Ehlers-Danlos syndromes (EDS) - Ebony's Story
Hello, my name is Ebony, I’m a 22-year-old Communications/Arts university student. Like most people my age I like to hang out with friends, and have fun. Unlike most people my age, I have a connective tissue disorder called Ehlers Danlos syndrome (EDS). More specifically, I have Hypermobility type Ehlers Danlos Syndrome (hEDS). EDS has 13 different types, one of which is fatal (vascular EDS), but all effecting your bodies collagen. You might know collagen from beauty creams or pills, but its real purpose is like your body’s ‘glue’. Because my ‘glue’ is made wrong I suffer with dislocations and subluxations (partial dislocations) every day. I also damage my joints very easily. As of right now I have a SLAP tear in my right shoulder (that my dr said if I was normal they would operate on), torn patella cartilage in my right knee, and tenosynovitis, bone bruising, and joint effusion in my right ankle. All this just from daily life (e.g walking, sleeping, picking things up). On top of this I have Endometriosis, Syringomyelia, Inappropriate Sinus Tachycardia, and Fibromyalgia. Some of these have been linked to EDS, some not.
Because I am so young, I run into a lot of “You don’t look sick” and “You’re too young”. Not just from random people on the bus, but also doctors. I have had a neurosurgeon tell me I am making up my symptoms, when you can see my syringomyelia on the MRI very clearly. I have had a GP ask why I came in for some test results as “You will always be in pain, nothing will change that”. Because of my age, my pain was dismissed for years as ‘growing pains’ by many doctors, causing my diagnosis to take 9 years. Thankfully I have a great team of doctors now, but the adventure finding these was a big one.
Something I wish more people would do, is not assume. Not assume that I’m too young. Not assume I’m faking it. Not assume I’m ok because I smile. Yes, I don’t have vEDS, so it’s not fatal. But hEDS is the type most like to (ironically) limit mobility, and end up in a wheel chair. I wish people (no matter how they mean it) wouldn’t say “I wouldn’t want to be you” or “I can’t imagine being you”, because I am me. I don’t get a choice in the matter. And it makes me feel worse.
Having said this, this whole journey has ultimately been a good thing. I found out who is really there for me, and I have met so many amazing people along the way. From the people at APMA to other chronically ill people, even some of the great doctors who are now in my team. I am so glad to know them.