Replies to I’ve had HH since my early 20’s, but wasn’t diagnosed (through biopsy) until i was 47….

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Skin Health | Last Active: Sep 3 7:58pm | Replies (169)

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@mickey1014

I’ve had HH since my early 20’s, but wasn’t diagnosed (through biopsy) until i was 47. It seems to be getting worse since menopause. I have a couple of questions...one, are there any studies currently happening in the US? And two, has anyone with HH had experience with the Covid vaccine?

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Replies to "I’ve had HH since my early 20’s, but wasn’t diagnosed (through biopsy) until i was 47...."

Chris Trout, Volunteer Mentor | @artscaping | Apr 12, 2021

Good evening @mickey1014, Welcome to Mayo Clinic Connect. I cannot even imagine what your life has been like with HH. I have my own internal and neuropathic itching issues and they pale by comparison. So this is a rare and genetic disease that I know absolutely nothing about at this point.

I was able to find the NORD organization which also lists all of the clinical trials for HH. There may be other helpful information and it may be worth a subscription.
https://rarediseases.org/rare-diseases/hailey-hailey-disease/
If you want me to take another look with you, I am happy to do that........I just wish I could do more. Let's not give up......

May you be free of suffering and the causes of suffering.
Chris

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