I feel like now is a good time to properly understand my diagnosis.
(I watched House, and there were a few concerning (and some, interesting) claims about the condition which I haven't sought to clarify (because I don't know where to go). Hopefully the literature will do so, and also help me in the long term).
Hi there, I'm not sure about books but if you look online for the EULAR guidelines on systemic sclerosis that will give you very good medical information. EULAR is European league against rheumatism and the guidance is research based best practice and is a symptom by symptom guide to management it also describes it but is quite technical if you aren't medically minded. Its a good thing to have when you see your gp as it can help them too.
Hi. I watch YouTube presentations - the annual SRUK conference and the bi-annual International Scleroderma Conference. I have learnt more from this type of source than anything I have read (which can range from scary to ‘over my head’ in medical terminology).
Hi, I found "the scleroderma book, a guide for patients and families" by Maureen D Mayes very good... factual, not alarmist - she has years of experience treating patients with all sorts of symptoms (bear in mind it's a bit old... but still very relevant). I got it 2nd hand really cheap!! Hope it helps
Hi,
As well as the other suggestions you can get leaflets from the hospital. I have a file with all the leaflets. They relate to all the areas this disease can affect, eg skin, kidnets etc.
In pre Covid time I attended a conference at my hospital lead by leading consultants in their respective fields. I found this extremely helpful. I took a friend too so they could understand more about the disease. There was a session on the pressure this illness can put on your mental well being. It was very enlightening & opened your eyes to other aspects & changes you could make to ease the pressure.
I read lots of research papers & articles on the Internet but found these very frightening.
You will pick up information as you go along & align to your individual needs.
When you visit/talk to your consultant prepare a list of questions. Take someone with you to write down the answers as it can all go over your head at times.
I hope this helps. Xx
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