So, I know that Ehlers-Danlos, autism, Alzheimer’s and Parkinson’s are all in the same genetic family. My family has a history with all of them. I’m next in line for Parkinson’s in fact.
So my question is for the entire group. How many of us have been diagnosed with Ehlers-Danlos?
Raises hand
If you have, do you have any tips for anyone who is recently diagnosed or seeking diagnosis?
Personally, my best tip is to really be careful walking and moving until you’re familiar with how to walk without hurting yourself as often. Also, brace up. Literally, get a bag and fill it with braces of every kind. It helps.
Yo fuck it was kind of like on my radar, but now I’m reading about Hypermobility like 'wtf this is called “Hypermobile metacarpo-phalangeal joints” and I thought it was my normal hand doing normal hand things?
I guess this is super useful to gauge what might expect me in my coming years. I do feel the wear in my finger joints.
Age just tends to make anything that’s already there a little bit worse. I just chalk it up to my EDS anymore because I have enough diagnoses and I’m terrifying to get anymore. Thankfully, EDS is kind of a coverall for all of us weirdos with it. I’m sorry that your finger joins are doing a number as well.
