"i Have Parapsoriasis En Plaque"

I have just been diagnosed with "Parapsoriasis En Plaque." I have been reading many different publishing's about this and it can be a little mind boggling and even scary to read that this very well is the beginning stage (plaque stage) of "Mycosis Fungoides" There are so many different opinions from doctors and even all the testing does not give us the answers we need to know for sure. I know that this is a rare disease and they say about 1 in 200,000 can get it. Also it  mostly affects men. Well I am a women (GO FIGURE). So if there is someone else out there, just know you are not alone,as I feel like I am right now. Hence the fact that I am the first one to enter into this forum. So lets talk, laugh, cry and learn to live with this now, and to continue to live with whatever the future holds for us.; AT LEAST WE WILL NOT FEEL ALONE.....................Bonnie

LlamaMama4u LlamaMama4u
56-60, F
2 Responses Feb 23, 2010

Hi!

My english is bad (i am 42 years old estonian woman)...so i am sorry about mistakes

Bonnie, You posted your story about 2 years ago. How are you today? How is your health? What kind of treatment you got? I also got terrible diagnose - large plaque parapsoriasis and right now I'm scared, worried and nervous. Maybe you can help me? Or maybe somebody else?

with best regards,

Tiina

i have the same too but im just 24...so it sucks. anyway im not going to lie around brooding over it....i think its good in one way that i have got diagnosis now coz i was confused about what to do with my life....so now i have a mission...may sound silly curing ur own disease but...my mission is to find the cure for mycosis fungoides...i know its gonna be an uphill battle but ill do my best....pls support me in this regard so that thousands of sufferers can get relief from this horrible disease....i am gonna set up a website soon where i will update my research on this disease and publish my findings...keep checking back here.