Wednesday, 29 October 2014

Tuesday, 21 October 2014

The Year My Life Got Turned Upside Down – DIAGNOSIS OF SCLERODERMA -

The Year My Life Got Turned Upside Down – DIAGNOSIS OF SCLERODERMA - During the summer of 1997, aged 24, I had begun to feel quite unwell. There was not a part of my body which did not ache and by the autumn, my fingers had become stiff, swollen and shiny. I went to see my GP who arranged for the standard rheumatology blood tests as well as an ANA test. I was then referred to my local Consultant rheumatologist, with by now, typical scleroderma like symptoms with skin thickness covering my entire body, which was not only tight, (I could not stretch my arms out), but very itchy. I also had difficulty with swallowing / small mouth and stomach cramps, as well as I would turn blue at the slightest of draughts. I was relieved that I finally had a diagnosis and I was not going to let it take away my dream of being a barrister. I was then prescribed a cocktail of disease modifying drugs with plenty of horrendous side effects but no effect on the disease progression. By December 1998 I went to see Prof Black at the Scleroderma centre at The Royal Free hospital, and continue to be a patient at the centre under the care of Prof Denton. In 2004 I had to give up my career as a barrister and attend to the full time job of managing my symptoms. I have a disciplined daily routine to keep my symptoms under control, including moisturising my skin (symptom reversal currently at 95%). I am extremely grateful that I am one of the lucky ones in that my disease was identified early enough to respond to treatment, with minimal organ involvement. I have annual Echo and Lung Function tests and I take medication for the severe raynauds. I now have a disciplined daily routine to keep my symptoms under control, including moisturising my skin (symptom reversal currently at 95%). As well as being respectful of my symptoms – I am always wearing gloves / I have changed my diet and lifestyle (very few late nights). I am extremely grateful for the help and support that The Scleroderma Society charity, as well as The Raynauds and Scleroderma Association has given to myself and my family. In particular, the sharing of up to date treatments, research, survival tips, and gadgets that make the day to day living, easier to cope with. As well as continuing to provide hope that a cure will be found in my life time. 21st October 2014

Saturday, 4 October 2014