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Showing results for tags 'Systemic sclerosis'.
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Hi all I recently saw a post on another site regarding smear tests being very painful but I haven't seen any posts or literature regarding how Scleroderma affects the 'vagina' on this site so I wanted to share my story. In summary I was diagnosed with Scleroderma in 2008, had a crisis in 2011 which was diagnosed as heart and lung failure resulting in having myocarditis and lung fibrosis, started new treatment regime including cyclophosphamide, rituximab and mycophonolate (which I still take) and I am delighted to say I have not only come through the other side but there has been evidence of the lung improvement. I lead a good life, am not as fit as I once was but it doesn't stop me getting on, however............there are still symptoms which I find frustrating such as Raynaud's, reflux causing regurgitation (despite being elevated in bed) and even more frustrating is how my sex life is being affected. My general practitioner is very understanding but is reluctant to say it is due to Scleroderma, she thinks the cause is due to dryness (post menopause) but it doesn't matter how much lubricant I use, the pain is excruciating and unbearable and even causes bleeding. Luckily I have a very understanding husband and there are lots of other ways to be intimate It would be interesting to hear if other people have similar problems and how they overcome them? Have a great day D x
Satya posted a topic in Sclero Forums (MAIN)Hi All, My sister is badly suffering from systemic sclerosis skin disease, We have consulted many doctors but they are unable to control or cure this problem. Yesterday we get to know from the hospital that there is no hope at this stage as her lungs are affected by this disease and her life is threatened now. Please help us by providing some details like where and how can we save her life by getting the right and proven treatment. I can send more details and scan copy of final reports, please let us know if there are treatments available for the same, Thanks and waiting for some positive response. Satya INDIA
I was diagnosed with SSc last year, Doctor's think I have had it for the last 20 years (I'm nearly 43) I also have Raynaud's and recently diagnosed with PBC (Primary Biliary Cirrhosis). Get Blood taken every 2 weeks just now because my liver levels are too high, this condition really gets me down because I sometimes feel people don't understand that I am in pain. The SSc effects my hands and feet and I am in constant pain everyday. My Doctor has taken me off my medications for scleroderma just now because of my liver levels. Would love to hear from anyone who has the condition x Karen xx
Hi All, I have systemic sclerosis and, unrelated, very little eyebrow hair which is extremely frustrating and has a massive impact on my life. I am hoping to have permanent eyebrows tattooed (this is not a regular tattoo but a special clinical procedure which does not cause scarring, only penetrates the first layer of skin, does not bleed) My question is not about the risks of the procedure in general but to ask if anybody has had or knows of anybody who has had this procedure with systemic sclerosis? At the moment my skin score on face is 0. I really hope that somebody can help with this question Many thanks in advance Jay :)