2011-02-19 06:43:16 ET|
Well, got a call from the dermatologist yesterday morning, asking if I could come in for the afternoon.
My bloodwork came back negative for the gluten intolerance, but they knew I still had some sort of autoimmune disease.
He gave me a diagnosis of Pemphigus Vulgaris
It essentially means that my antibodies are attacking the stuff that holds my skin cells together, which causes the skin to separate and blister. After it blisters, it doesn't heal properly, so you end up with sores. Once those heal over, the top layer of skin doesn't always reattach to the under layer, so you are sometimes left with loose, easily torn skin (and more sores, and so forth)
I've been given instruction to not pay attention to the photos online, because they are usually the worst case scenario, and mine was caught pretty early. (so, if you do look it up, mine is nowhere near as bad, and is mostly on my chest and shoulders)
I'm being put on Prednisone for a while, which means I have to get regular blood tests, because I will be more susceptible to infections (I'm going in for a long list today, but later on it will be less tests). After that, I will be going on a different medication that is more specific in which antibodies it suppresses, so I won't be totally defenseless.
My mom sent me some websites "that might help" - it's for two Pemphigus "faoundations". One of the sites makes it sound like an incredibly debilitating disease, which with no treatment, I could see it being just that.
But really - I've been managing just fine.
Most complications seem to arise from not getting treatment and the sores taking over most of the body and getting infected. I've been smart enough to go to my doctor, and to use things like polysporin on any resulting sores to promote healing and prevent infection.
It is uncommon / rare - as low as 0.76 cases per million to 0.5 cases per 100,000 depending on area / race, etc. It seems to be more frequent in those of Jewish descent. As far as I know, that does not apply to me.
Also, it mostly affects people between 50-60 years old, so I told Rass that his wife is really an old lady.