Thursday, 7 May 2015

May Awareness Month: Ehlers-Danlos Syndrome

I have Ehlers-Danlos Syndrome.
May is Ehlers-Danlos Syndrome Awareness month.
Have you ever heard of EDS?

EDS is caused by faulty collagen, it's genetic, I was born with it. There are several different types, some much rarer and severe than others. I have type III, more commonly known as the hypermobility type; I'm very bendy, have stretchy skin, unstable joints, chronic fatigue, terrible balance and coordination, on top of a lot of pain. Since the connective tissue is dodgy, my skin, organs, bones, ligaments, muscles and tendons are affected and as I have no breaking point, I basically bend until I dislocate, sublux (partially dislocate) or cause some other damage. I pull muscles easily, I wake up with dislocated fingers, if I sit a certain way I sublux hips; I really need wrapping up in cotton wool.

Imagine your legs when you're stood up, your knees are straight, aren't they? Mine bend back a bit, like a flamingo and this happens every time I take a step, stretching everything, the skin, muscles, tendons and ligaments...Now apply it to your whole body. All day, every day, someone with EDS III is hyperextending, even typing this the tips of my fingers are bending backwards. And that's why I'm in pain all the time. Some days are much worse than others, but I can't remember a day I have been completely pain free. Then when I'm feeling a little brighter the fatigue hits me in the face with a hammer and I can't do anything until I've had a nap. Or brain fog takes over and I can't find the simplest word, for example, I asked my boyfriend to 'close the window doors,' because I couldn't summon 'curtains' to my mind; this happens way too often. I also have horrible muscle spasms and twitches, sometimes punching myself in the face or close to. There's a lot of comorbidities that are related to EDS but I'll leave that piece of awesomeness for another time.

EDS isn't the easiest condition to diagnose as it doesn't show up on X-rays, MRI scans, blood tests or any conventional screening a doctor might send a patient for. A lot of people wait years for a diagnosis and that is really sad.
My Story:
I have been in pain and living with EDS since I was 13 years old but wasn't formerly diagnosed until I was 19. I can't tell you how many counsellors and psychiatrists I visited because apparently my pain was 'all in my head.' I was depressed, suffering with anxiety and in agony, but only my family believed that my physical pain was real. Those six years whilst I waited for a diagnosis were torturous; I didn't want to go and talk to a psychiatrist about how I was manifesting the lack of relationship with my father into physical pain, or how I was faking agony to avoid going to school to be bullied. I knew there was something wrong with me and it was much more than my mental health. Eventually, my step-dad paid for me to see a consultant and within five minutes of being in the room, my life changed. I was diagnosed with Ehlers-Danlos Syndrome.
Nine years after my diagnosis and I'm still learning about my body and my condition. I sometimes forget I have limitations and really beat myself up for not being able to do what everyone else can. Other times I'm incredibly grateful for my life and love how much of a strong person my disability has made me. Don't get me wrong, I'm not one of those happy-go-lucky positive people, those people annoy me, but I don't feel sorry for myself. I'm in pain, agonising pain on a daily basis but these are the cards I was dealt. I use Smart Crutches to get about and a wheelchair whenever we go anywhere as I can't walk more than a few steps without wanting to curl up in a ball of agony and cry. I'm still getting used to all the adaptions, splints and braces I need and I feel like I'll always be on this learning curve, mainly because I'm stubborn but I'm sure I'll get there in the end.
Any questions, please free to ask. .
Sarah x


  1. feeling your pain just recently moved to Florida WORST MISTAKE of my life i cant get any help what so ever and the things ive begun to think just to stop the pain are starting to scare me

    sarah in hell

  2. Wow. That sounds so hard to deal with. You're a really strong person to deal with it and manage that pain every day. I've never heard of EDS until now, so thank you for educating me on it.

    - Courtney

    1. Thanks for being willing to learn about it :) xo

  3. Hi Sarah! I've just been diagnosed with EDS type 3. It's taken over 10 years for me to get a diagnosis but I am happy I finally have one and my previous health issues have been explained. Thanks for this post - I'm still grappling with my new diagnosis and learning it :) Harriet


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