May is Ehlers-Danlos Syndrome Awareness Month. I was trying to think of a way to really capture how much hypermobile EDS has impacted my life over the last few years, so I decided to put together a little video that shows some of the ways my life has changed because of it. 🧵
It doesn’t show everything because there are lots of aspects of hEDS that can’t be easily visible in a photo and there are some parts of this disease that are too difficult for me to share publicly, but it provides a pretty good snapshot of my particular experience with EDS.
It starts with a pic I took in the hospital on my last day of work about 5 yrs ago. My best friend picked me up that day because I was feeling strange, and then I ended up at emerg because he noticed that half of my face was droopy and there was concern that I had a stroke.
It wasn’t a stroke - it was Bell’s Palsy and I recovered from it in a couple months - but that marked the last day of my career. Since then I have been through five years of new and scary symptoms and I’m now a full-time wheelchair user with limited use of all four of my limbs.
Hypermobile EDS now affects how I walk, talk, and basically everything in between. It’s incredibly difficult to manage because I never know from one day (or even hour) to the next how this condition will present itself. I have to be prepared to always be surprised by my body.
There is unfortunately no cure and barely any treatment for EDS. I have an amazing medical team who do everything they can to help me but there is such little understanding of this disease that I am mostly just kept as comfortable as possible.
I do physio, occupational therapy, and use braces and mobility aids to help me, but I can’t pop a pill that will reverse some of the damage already caused to my body or that will make my symptoms go away. But maybe someday in the future I will be given that option.
That’s why I share my story. Because maybe the more people who see how pervasive this disease can be, the more funding and research will go into the study and treatment of it. Ehlers-Danlos Syndrome has taken a lot away from me, but there’s always still room for a little hope. ❤️
Video description: Photos and short clips of me over the course of five years. Lots of clips of hospital beds, random braces for legs, arms and neck, different mobility aids and some of my fav people helping me figure it all out. Audio is a cheesy song called All My Life by Wild.
If you’d like to learn more about EDS I recommend following @ehlersdanlosuk and checking out their resources available on their website: ehlers-danlos.org

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