EB (epidermolysis bullosa) Support

[LoneStarfruit]

I don't see any threads on here for those of us with EB. I surely can't be the only one?

For those not in the know, EB is a group of genetically-inherited connective tissue disorders. In simple terms, it's a condition that causes blistering and/or extreme skin fragility, making it an often very visible and always painful condition.

For my part, I have EBS. It affects primarily my feet, though I have quite a reactive/sensitive scalp (ok, let's be honest, ALL of my skin is reactive/sensitive), which may or may not be related to the EBS.
I'd love for anyone else with EB on here to come & discuss how our it impacts our hair care regime, growth, goals, etc!

[LoneStarfruit]

Boosting in case anyone with EB has joined since I posted this. <3

[0xalis]

I don't have EB but connective tissue disorder solidarity I have EDS

[LoneStarfruit]

I have two close friends with EDS. I guess we all tend to stick together!

[Kalamazoo]

I have neither EB nor EDS, but I'm allergic to the local tapwater, so I buy bottled spring water to heat on the stove to a comfortable lukewarm, & then carry the pot of water to the shower to dip & pour for either a "shower" or a hair-washing. The less physical contact I have with tapwater here, the better.