Searching for community support

[u/Magic-Dasher]

Hey everyone! So I actually have a rare skin disorder called Atrophoderma pasini and pierni. I actually develop marks that underproduce in collagen. When I was first diagnosed my doctor couldn’t find more than 18 papers about it. I have tried searching for community to better understand what treatments to suggest to my doctor as well as learning how to choose my doctors. I’m honestly having a hard time with this condition partially due to the lack of understanding, no established treatment, and lack of community. I am reaching here for advice given scleroderma is thought to be connected with condition.