I first found out that I had scleroderma on an initial visit to Newcastle Infirmary in January 1973. I was then 35. I had developed circulation problems at the age of twelve but no one knew what was wrong with me. I was sent to a heart specialist at The Westminster Hospital in London when I was fifteen but he prescribed Ronicol and said I would grow out of it.
At the age of seventeen I left school and went to work at Dr. Barnardos prior to becoming a nurse. When I had a medical, I was told that I could not possibly do that kind of work due to the condition of my hands. By this time, as well as experiencing agonising changes of colour and numbness in my hands, I had developed small, painful scars on the tips of my fingers and on my ankles. I went back to the same heart specialist. This time, although he said that I could still grow out of it, he gave me two years and told me that if it didn't clear up in that time, I would be unable to nurse. After a year I realised that it was not getting better and trained as a teacher instead.
I continued to see the heart specialist a couple of times a year and in 1964 when I told him that I was going out to British Honduras (now Belize) to get married and live there for a few years, he was very interested to see what effect the warm climate would have on my condition.
After a few weeks in Belize, I developed a small sore on the inside of one ankle. The doctor thought that I had been bitten by a spider. A week or two later another sore developed in the same place on the other ankle. Obviously not a spider! This situation continued with two or three extremely painful ulcers on each ankle only clearing when I was pregnant. I used to get a high temperature approximately once a month, which I think was nature's way of giving me a rest. Then, I saw an American doctor who said that I had phlebitis and I spent two weeks in hospital in a temperature of ninety degrees with a hot water bottle on my feet! The ulcers improved but soon returned when I left hospital. We returned to England in November 1967 and the phlebitis cleared up although I still had the usual circulation problems with my hands.
Thinking that everything would be all right, we went out to Barbados in July 1968. Again, after only a week or two the ulcers were back. Although it was warm and very pleasant, whenever I went into an air-conditioned building my hands would go blue. In 1972 our family doctor told me that he felt that it would be better if we returned to England. For the first time I received a name for my condition - Raynaud's Phenomenon. Once back in England however, the ulcers did not clear up, so - as we were living in Hartlepool at that time - I was sent to Newcastle to see the specialists. There, I had my condition given a name.
I have mostly managed without specific treatment. Ronicol was not used by the time we returned to this country and I preferred the disease to the side-effects of Nifedipene. While in Hartlepool during that first very severe winter, I received a Reomacradex drip every six weeks. This helped a great deal. After a year we moved to Shropshire and the dermatologist was not happy about the treatment or even that Raynaud’s existed so I ceased to see him. My family doctor was very supportive but admitted that I knew more about my condition that he did. He encouraged me to keep up with the craft projects I did to keep my hands moving as much as possible.
It was sometime in the next few years that the Raynaud's Association was formed. I joined as soon as I heard about it and was relieved to know that there were others like me. In 1988, four of my fingers having turned black due to ulcers under the nails, I showed my doctor an article written by Mr. Pardy of Newnham Hospital, London which I had seen in the Raynaud's newsletter. He immediately wrote to Mr. Pardy and I had the nailbeds removed from those four fingers. Mr. Pardy reckoned that he had not done a very good job as my tendons were damaged (a risk I had been warned about) but he gave me a new lease of life. I get very few ulcers on my fingers now due to the advent of handwarmers and although I still get ulcers on my feet and ankles, they tend not to be such a problem. I had a very bad one at the end of 2008 which led to me receiving a course of Iloprost at the Royal National Hospital for Rheumatic Diseases in Bath in December 2009. This successfully cleared the ulcer.
At present, the disease is fairly stable. Kidney and lung problems that I had in my younger days are less severe than they used to be but I now have reflux and bowel symptoms. As to treatment - I have been seeing Dr. Lovell in Bath on a yearly basis for over 20 years and he is very supportive. I am also on the research programme offered at Bath led by Professor McHugh. I take medication for the reflux and bowel problem. When I saw on a recent questionnaire the long list of tests available, I was amazed! I believe I have had very few of them but I was diagnosed so long ago that those tests were not then in existence. I now have an annual lung function test and an echo E.C.G. I have some scarring on my lungs but it seems to be fairly stable. I have recently developed dry eyes and am receiving treatment for that.
Sometime in my late teens I was told that I would probably lose the use of my hands. I decided that I had better use them while I could so I took up various crafts - sewing, knitting, embroidery etc. By continually using my hands I have not lost the use of them and probably do more with my damaged hands than others with fully functional fingers. In my seventies now, I have added papercrafts and machine knitting to my skills and as well as making things for friends and family I teach regularly at my local craft and knitting club.