Rebecca

My name is Rebecca, and I'm 28. I have been diagnosed with scleroderma for 7 years now, my correct diagnosis is polymyocitis/scleroderma crossover syndrome or/and depending on what doctor you are, diffuse systemic sclerosis. I would love to get in contact with anyone with polymyocitis as we seem to be pretty rare! I was diagnosed with polymyocitis when I was seventeen after many years of going to the doctors with swollen and painful joints, and fingers that had virtually turned to claws. The doctor did not believe me at the time as they believed I was 'school phobic' whatever that means but as it turns out I was having symptoms without even realising it. When I was eventually referred to a wonderful rhuematologist called Dr Halsey he diagnosed me straight off and told me that it was likely that puberty had brought about the onset of the disease. I went home and cried but I was so relieved that there was something wrong with me and I wasn't going mad, I thought the things that are happening cannot be real. Another thing that makes me laugh now when I think about it is I thought "well at least it's only a muscle problem, not something that might kill me like cancer." Dr Halsey started me straight off on a course of steroids- predisolone I was on 60mg a day and my face and body balloned I started at eight and a half stone and ended up near fifteen as the steroids were reduced I slowly lost the weight but it goes on in odd places that you cant shift. I have had many unpleasant and humiliating tests but now I think I have become immune to the humiliation of it all and can take my clothes off in front of virtually anyone! not that I do people would run a mile. It's not because I find my body gorgeous, I actually find it so disgusting that I can barely touch it and haven't looked at myself completely in about 3 years. I just look at bits. I cannot allow anyone to touch me anymore even members of my own family as I feel as if I am being subjected to an examination or that they may be ridden with germs, at the moment I am taking cyclosporin to reduce my immune system so everyone is a potential germ threat, I've already had three chest infections this year which is quite good for me. I'll finish now but please e mail if you would like a chat, honestly I'm not as miserable as I may sound.

Rebecca - theendofhertether@beeb.com