This time last year I was going thru a terrible time, my young son was dying of Leukaemia and I was travelling to Birmingham daily where he was a patient in the teen cancer unit. I have been diagnosed with Scleroderma for 14 years and have problems getting effective treatment locally so was told by Dr Denton at the Royal Free if I needed to see him contact the hospital and he would see me. From the stress I was under with my son 3 fingers on my left hand went black so I rang RF and also wrote but was told I would have to be referred by my GP. To cut a long story short my left hand was amputated at the wrist in July my lovely son passed away in November.
My local Rheumatologist told me my condition was not serious to warrant any new treatments and Iloprost does nothing for me, I have had it 13 times in the past.
Now I have no specialist. There is nobody I can trust anymore.