Hi I am Jackie, I am 35 and have Chiari Malformation, PseudoTumor Cerebri,Hydrocephalus, amongst other issues that are more common, I am pushing myself (even though I have been told not to) lose weight, I have never been a "small" women, but my health issue have left me laid up for months at a time, I would love to talk with other people with rare diseases, I understand the daily struggles you can face, and what it is like when people around you have no idea what you may be going through! Have a good friday!!

I'm Grete. I'm 35 and am in the diagnosis process for Ehlers-Danlos syndrome (hypermobility type). I had originally planned to dance professionally, but was diagnosed with fibromyalgia at 20 (and now we get to figure out if that was a misdiagnosis or of I have both). This app is the only way I've successfully lost weight since college, but I'd never really poked around the group section before. A group member put a link on a message thread about EDS I found through a Google search, so here I am I'm struggling with how to excersize without hurting myself - weight loss is helpful, but it won't keep me from falling apart.