Anne H Mawdsley MBE
When diagnosed as having an illness it can be distressing, but when it is a rare disease of which little is known, the situation is even more disturbing. Now more than ever before, patients want to understand their condition, so that they can learn how best to cope and live with it.
Anne was diagnosed with Raynaud's in 1975, and spent the next seven years trying to understand her condition and find relevant information. Needless to say, very little was available. During this time she was threatened with amputation of several fingers, due to the extremely painful ulcers which were constantly developing. Many treatments were offered and tried, all to no avail.
The next blow for her came in 1984 when scleroderma was diagnosed. There were so many questions such as "Why me?" "What next?" none of which had any answers but the most important one of all, "What is it?". Anne knows only too well the feelings of isolation, anger, frustration, fear and bewilderment at what was happening to her body. She needed to talk to other people who had scleroderma and felt as she did, but in addition, she really wanted to do something positive about it.
The Raynaud's Association was founded by Anne in 1982 as so little help was available for sufferers. The name was changed in 1990 to become the Raynaud's & Scleroderma Association, because of the close link between the two conditions. Being in regular contact with people who have Raynaud's and scleroderma, Anne has never failed to be amazed by their courage and determination. Her main aim is to ensure that the Association is instrumental in providing care, support, advice and encouragement to sufferers in their everyday lives. Anne also strives to raise funds for much needed research.
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A great deal of my time is spent talking to people on the telephone and answering letters and emails. The majority of people I speak to feel as I did over 30 years ago when nobody listened or understood what I was going through. It is good to be able to offer advice and reassurance to those who feel isolated, that there is a light at the end of the tunnel and all is not doom and gloom. I am sure that I personally have been helped by having a positive attitude towards living with Raynaud’s and scleroderma. It is not easy when one has to change one’s whole way of living and certainly there are many days when coping with the pain can be a trial.
I feel that my life has been enriched by meeting and communicating with so many fellow sufferers, all of whom have a tale to tell and who face life with uncertainty, yet show tremendous courage and determination. My pet saying is that one should live one’s life and not one’s illness. We only get one chance in life and therefore need to live it to the best of our ability, often under difficult circumstances.
I am always happy to discuss and share experiences with anyone who just needs to talk to someone who understands."
Anne
