Ann's story - scleroderma

Anne offers a patient's perspective to scleroderma, a little-known but serious connective tissue disease.

I was diagnosed with Raynaud's phenomenon in 1975 at the age of 33 and experienced feelings of frustration, depression, isolation and at times fear. I had great difficulty coping with cold temperatures and even a slight change in temperature would make my fingers change colour and become excruciatingly painful. The poor circulation caused gangrenous ulcers on my fingers, I faced the threat of amputation, and had to cope with the daily needs of my two very young children.

Amongst the avenues I explored were faith healing, acupuncture, food elimination diets, herbal remedies, physiotherapy, connective tissue massage and hypnotherapy.

You name it - I tried it - but all to no avail. My young sons couldn't understand why their mum's hands were hurting, my husband was finding it difficult to understand the pain I was in and I felt as though my life was turning upside down. Possibly the fact that I had always been fit and healthy, my career having been in physical education, made it even harder to come to terms with.

More changes had started to take place in my body. I began to have difficulty in swallowing and went back into hospital for tests. These indicated a narrowing of my oesophagus which required a dilatation to allow food to pass through more easily. This procedure was repeated several times over the next few years until proton pump inhibitors (drugs used to treat stomach ulcers) became my lifesaver and enabled me to eat more normally.

A chest x-ray and lung function tests followed but I didn't understand why, as I wasn't having difficulty in breathing at that time. It was all a mystery and then came the big blow when I was told I had scleroderma - and that was when the pieces of the jigsaw started coming together. The finger ulcers, swallowing problems, calcium deposits, excruciating pain and extreme tiredness. I was diagnosed as having the CREST syndrome, a specific form of scleroderma.

My condition however, continued to change with my lungs becoming affected and regular lung function tests became yet another challenge. Osteoporosis was next to be diagnosed and oesophageal problems resulted in a diagnosis of Barrett's oesophagus, which is a pre cancerous condition caused by long standing acid reflux from the stomach. I developed involvement of my bowels, which is probably the most infuriating and obtrusive problem to cope with. Surgery on the fingers of my right hand was a disaster and due to the effects of calcinosis, my fingers are now permanently bent and constantly ulcerated and painful.

I am determined to continue living as normal a life as possible. I am constantly seeking ideas to adapt how I can grip a pen, operate the computer keyboard, hold the steering wheel of my car and numerous other things at home that need adaptations. Simple things like getting out of the bath, holding a toothbrush, opening jars and cans all require extra thought and create new challenges.

Being positive has helped by concentrating on what I can do and not what I can't. I swim every morning at 7am before work and I attend pilates classes. Challenges such as flying in a helicopter, a hot air balloon and paragliding were for pleasure but then I decided to raise money for research with more crazy things.

Recent challenges include going round a rally course with a British rally driver, swimming with sharks and going down the Olympic Bob Run in St Moritz. I am not yet ready to retire from taking part in such adventures while I can still raise funds for research. My enthusiasm for finding a cure and for alleviating the suffering of people with Raynaud's and scleroderma is still as great as it was 25 years ago.

Life may throw up challenges but it is how one copes with them which is important. My motto has always been to live my life and not my illness and I shall be forever grateful to all the wonderful, courageous people I have had the pleasure of coming into contact with during my journey of discovery - a journey I wouldn't have wished to have taken but which has, by chance, enriched my life.

Ann’s story first appeared in Arthritis Today in 2007.