Thread by @AccessYYT

May is #EhlersDanlosAwarenessMonth. I can’t think of a better way to show how much EDS can impact someone’s life than by taking a picture with just some of the mobility aids, braces and devices that I need to use to keep myself going. 🧵

Most of the supplies in that photo have only been acquired within the last few years. Because it took me almost a decade to get diagnosed with EDS. I went through years of disabling pain, fatigue, muscle spasticity and more, without knowing what I really needed to do to help me.

Years of misdiagnoses and shrugs from doctors. Years of being told to do things like exercise more and push through that ultimately caused more damage. Years of not having the option for insurance to cover equipment and braces because doctors didn’t think or know I needed them.

That pic might look sad to you. It makes my life seem difficult and painful. But it also shows my privilege. In the world of EDS it’s a privilege to have medical providers who know what my body needs, who can write prescriptions for mobility aids so I have better access to them.

There are far too many people out there with the same symptoms and disabilities that I have who don’t get to fill a room with just some of the daily living and mobility aids that helps them live their best life.

Ehlers-Danlos Syndrome is a genetic condition affecting connective tissue. Connective tissue is found all throughout our bodies, so EDS impacts every single part of a person’s body. It is painful, tiring, disabling and overwhelming. And that’s WITH support from my medical team.

So many people with Ehlers-Danlos Syndrome fall between the cracks. For years, maybe decades, and sometimes for their entire lives. The average time to diagnose EDS or hypermobility spectrum disorder (HSD) is 10-12 years.

It was hard for me to be sick and increasingly disabled for a decade of my life before I found a dr who asked the right questions and put in work to help me figure it out. But I’m thankful that day finally came for me. I want that day to come for everyone else who might have EDS.

That’s why raising awareness about EDS is so important. It can lead to more research and understanding, quicker diagnoses, and better resources and support for those of us who have it. Everyone deserves that level of care.