Hey Reddit,
I’ve been chronically ill since birth with classical Ehlers-Danlos Syndrome (cEDS) — a rare genetic connective tissue disorder that affects about 1 in 40,000 people. It causes fragile skin, hypermobile joints, and frequent joint dislocations (yes, my joints pop out like bad party tricks, and no, I don’t recommend it).
I started using a wheelchair close to full-time at 18 due to mobility loss and joint instability. I’m 22 now, and I’ve been told I likely won’t live past my 40s due to complications from the condition.
That might sound grim, but I promise I’m not all doom and gloom. I’ve had to grow up fast in a lot of ways — managing doctors, hospitals, and big life decisions early — but I’m also still figuring stuff out like any other chaotic 22-year-old trying to exist in this weird world.
I’m open to answering pretty much anything (as long as it’s respectful). Whether you’re curious about disabilities, chronic illness, pain, mental health, accessibility, or even the most awkward encounters I’ve had with strangers — ask away.
Thanks for stopping by — and remember, if something you ask makes me roll my eyes, at least I’m already sitting down. 😎👩🏻🦽➡️
Comments
What made your doctors decide to do genetic testing to find out which type of EDS you have?
Has your heart been affected? If so was it prolapsed valves?
Do you believe in some kind of afterlife?
If not, how do you deal with the idea of simply not existing?
I guess we’ll all deal with it at some point, but what about as a relatively young person?
No question, but I also have EDS and am turning 46 this year, so try to remain optimistic! I can walk, but have many of the same issues as you.
You’ve clearly had to become resilient in ways most people can’t imagine. What’s one piece of wisdom or perspective you’ve gained that you think more people need to hear?
What do you think of the people who fake illnesses/fake Ehlers-Danlos Syndrome, specifically? I remember a girl years ago on instagram who claimed to have POTS and EDS and it turned out to be a sham once the pieces were connected. Does it offend you or hurt those who are truly going through it, or you don’t really care?
What do you do to take care of your health? (Diet, exercise, medicine, vitamins, etc).
I don’t think I’ll make it past 40 either..due to my illnesses and I hope your doctors wrong, I don’t know how to feel about all my diagnoses