Ehlers-Danlos Syndrome & Hair

[mallorykay13]

I have EDS which is a collagen problem. I'm putting a feeler out to see if there are any other hypermobile zebras out there and see what data we can get!

[evernia]

hello, a moment ago you commented under my thread, and now i have to put a comment under yours! i do have it as well, thankfully i'm still at the age where it's just mostly about showing people weird contortionism at parties... does it have any effect on hair except that it's usually finer and more prone to falling out and breakage?

[mallorykay13]

hello, a moment ago you commented under my thread, and now i have to put a comment under yours! i do have it as well, thankfully i'm still at the age where it's just mostly about showing people weird contortionism at parties... does it have any effect on hair except that it's usually finer and more prone to falling out and breakage?


I haven't found any hair-related symptoms. I'm 29 and was diagnosed at like 22. My hair and nails seem to be normal....... curious....:confused:

[evernia]

finer hair seems to come up in discussions about it often, like here (https://www.reddit.com/r/ehlersdanlos/comments/xzqotw/does_eds_effect_our_hair/), and it's in the characteristic symptoms of the vascular type, but it doesn't affect everyone. i think it might be the reason why my hair can rip out so easily, like there's less collagen in the follicle skin to hold it, but that's just a guess

[BVU]

I have hEDS, so it doesn't affect me too bad. It seems that our hair is easier to rip out (Like @evernia said), and that our strands are usually stretchy? I don't have that problem but I know a lot of people with EDS do. I also heard of my cousin's hair follicles drastically changing when she was about 23, which made her hair go from about 2A to 3C, but I'm not 100% sure if that was EDS or an undignosed condition, although her doctor said it was likely EDS. Beside's that, our nails are a hit or miss. Some people with EDS have stunning nails, while others break easily. Hard saying with such an broad, undignosed, and understudied disorder :(

[Wingspan]

I have EDS, either classic or hyper mobile type (and other illnesses, like Crohn's disease and pituitary tumor and newest thing is hyperparathyroidism and hypocalcemia - I think having all these illnesses may be related to having EDS...) .
I have dry, thick, wavy hair. My hair used to be super thick, now it's just average thick. I have some breakage with my hip length hair, I'm trying to start taking better care of it and moisturise in between washes and wear it up or braided more..