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Steve D: Diffuse Scleroderma

I am trying to claim benefits, but I have found that because this disease is rare, it seems more difficult than if I had something everyone knows about, such as arthritis.

Hi, my name is Steve. I am forty-two, married with a son, and live in England. My symptoms started in 1993, when I noticed my fingers would start to get cold even though it was summer and the temperatures were mild.

This started about one year after my dad died of a sudden heart attack. The next thing I knew, the little finger on my right hand started to curl inwards. This is when I had my first test in a hospital, which was a skin biopsy taken from my forearm. From this my rheumatologist confirmed I had secondary Raynaud's, with diffuse scleroderma. He told me not to worry unduly, but to go away and find out as much as I could from leaflets about how to ease each of the symptoms.

Before long, more of my fingers were curling up and making my life harder, especially since I had a manual job in the aerospace industry. Five years later, after having tried my best to put up with the pain in my fingers and wrists, I asked to be moved into a more comfortable role at work. To their credit, they could not do enough for me. I have an assessor who visits me at my workstation to see if there are more things they can do to help me work at a computer. Even though I type slower than other people, I can draw on my experience of working on machinery to maintain a rewarding job.

In 1998, I had a MRI scan, which showed I have lung involvement; my lungs are currently eighty percent efficient, and seem to be holding steady. I went on a treatment of intravenous drugs to try to combat the fibrosis, but it did not seem to work.

During the last five years, my condition has slowly deteriorated, but I am still hanging in there working, and I still manage to drive. In England we have the National Health Service which allows us to have treatment in hospitals, so we do not have to worry about paying for that treatment. But this illness has definitely curtailed my earning power. My wife also struggles to maintain a full time job, whilst having to do my share of the chores at home. She has had to settle for temporary work, so that she can be more flexible.

All this does come at a cost, especially when I had to purchase a newer car with automatic transmission, and all the other gadgets that aid driving. My house needs adapting also to allow me to shower safely, and I have just been assessed for and been given a wheelchair because my right ankle is painful when I walk, so I will use the wheelchair to go shopping or on other outings.

I am trying to claim benefits, but I have found that because this disease is rare, it seems more difficult than if I had something everyone knows about, such as arthritis. But I am sure I will get the benefits eventually!

~ Update 01-29-06 ~

During the last seven years, my condition has slowly deteriorated, until eventually I had to stop working, but I still manage to drive. In England, we have the National Health Service which allows us to have free treatment in hospitals, so we do not have to worry about paying for that treatment. I am fortunate in that eventually I managed to obtain benefits, which along with my pension from work, I manage to live comfortably.

During the past twelve months or so, my symptoms do seem to have leveled off. I am hoping it stays that way!

Thank you for reading my story; it helps to share thoughts. I would gladly welcome e-mail contacts, especially from male patients, as there are so very few of us.

Anyway, warmest thoughts to all of you in 'our community'.

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ISN Artist: Ione Bridgman

ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.

ISN Story Editor: Judith Thompson Devlin

Judith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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