Thank you for taking the time to visit Sue and Adrian's JustGiving page. Sue and Adrian are amazing. Not only are they fantastic friends of mine, but they have decided to take part in the 100km 'Race to the Stones' event in July to raise funds to help find a cure for a very rare disease that I have - Scleroderma.
Scleroderma affects just 12,000 people in the UK. It tightens, thickens and hardens the skin around the whole body, inside and out, leaving them virtually solid and unable to do the simplest of things. There is no cure and, without treatment, it can be fatal.
I have been extremely lucky. I had tried all the medications available and yet none of them had worked. Last year, however, I received a stem cell transplant - a very dangerous and 'last resort' treatment to try and stop my disease from causing any further debilitating damage. The transplant is working; my recovery will take a long time, but there are still others far less fortunate than me, for whom there is no cure.
I have been treated for both Raynauds and Scleroderma at the Royal Free Hospital in London, for more than 20 years. The Royal Free is the largest centre in the UK to specialise in the treatment and research of Scleroderma. Again, I have been extremely lucky as my care is led by Professor Chris Denton, Professor of Experimental Rheumatology, who has dedicated more than 25 years of his life to finding a cure for those affected by the disease.
The Race to the Stones will be a huge challenge for Sue and Adrian. But, I have to be honest, so is living with Scleroderma. I am completely in awe of them and all that they are doing to take part in the race. By completing 100km in less than 24 hours, they want to raise as much money as they can to help find a cure for this wretched and devastating disease. If I could join them, believe me, I would. I am just not quite there yet!
But, if you can, then please help them meet this monumental challenge that they have set themselves. All monies raised will go straight to Professor Denton's Royal Free Scleroderma Unit and will be most gratefully received.
Thank you so much, Sarah - and, of course, Sue and Adrian
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