Connect
← Return to I have recently been diagnosed with bullous pemphigoid and I am looking
Discussion
I have recently been diagnosed with bullous pemphigoid and I am looking
Skin Health | Last Active: Feb 28 10:21pm | Replies (6)Comment receiving replies
It’s 6 years since your post but was hoping you still check his. I just got diagnosed today with this and am terrified as I have yet to know much about this thing, and seeing how few people are diagnosed I assume that means little is known about it at all let alone any closer to drs figuring out how to fix it. I think my body got triggers with it after taking amoxicillin for strep while I had been on humira for. Crohns disease. I am hoping to find people with it for the same reasons you listed and also just to help cope with the new illness added to my list.
Replies to "It’s 6 years since your post but was hoping you still check his. I just got..."
Connect
It's been 6 years since your post, 12 since the first post! But in case anyone sees this, there is a great organization called the IPPF, the International Pemphigus and Pemphigoid Foundation -- their website has a lot of great free info about these auto-immune blistering diseases. (My family member has Bullous Pemphigoid)
the website is pemphigus (dot) org (slash) patient-resources
There are dozens of great videos in their archive of patient educational webinars. It's all free. They also have local support groups and peer coaches you can get in touch with. Highly recommended.