I have not seen this rare condition before, I am sorry that there is not much information out there. Hope you do not have long to wait to get treatment and feel better. I have lichen Planopilaris which is another skin condition but not as rare.
I remember my gran had it on her shins, she use to get it dressed regular. More recently my parents neighbour was just diagnosed with it during lockdown and he has had nurses in dressing the patches.
Unfortunately those of us with autoimmune disease seldom get away with just one, my husband jokes that every year they find another one for me 😂.
Hopefully your treatment will start soon and you can get some relief from it . X
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