Anyone else have Cicatricial Pemphigus??? - Immune Disorders Message Board

huffle · 06-05-2008, 09:04 AM

I have been diagnosed with Cicatrical Pemphigus. Which is an autoimmune disorder that effects the mucosal systems of my body. I do not have the blisters or spots on my skin yet. Most of mine seems internal. My throat closes up and needs to be dialated occasionaly, my tear ducts are all closed, my uretha has had to be stretched open and I have vaginal stenosis also. In the past I have had a hard time with oral blisters on my gums and swollen lips and tounge.
So is this as rare as they say? I am only 46 and it is supposed to be an immune dissorder that effects much older people.

Huffle

Beccapooh · 06-30-2008, 04:30 PM

They still don't know WHAT'S wrong with me!!! I have several similar things as you, but, don't even want to jump onto another band wagon of "OH, maybe it's this....or that....". It's just too hard.

I do, however, have confirmed Perncious Anemia. Another condition of older folks. I was diagnosed when I was 35 years old. The median age of P.A. onset is 65. Not quite, where I am, yet.

How did you get DX with Cicatricial Pemphigus? I've been told that I should go to see an infectious disease doc or immunologist. I'm just not sure that I can start all over AGAIN!!! It's been a long hard road.

Good luck and I hope that you find someone that can help and support you, here.

Bec