'I have already paid for my funeral": Woman living with rare life-threatening skin disease calls for more funding to help sufferers (From Surrey Comet)
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'I have already paid for my funeral": Woman living with rare life-threatening skin disease calls for more funding to help scleroderma sufferers
A woman who has been told her rare skin disease will eventually kill her has called for more funding for research into the condition.
Lynn Ottaway, 55, said she has already paid for her own funeral, having been diagnosed in 2006 with scleroderma – an incurable illness which hardens the skin and internal organs.
In 2012 she was told that she would have only two more years to live.
Two years on the former care-worker is still alive, despite the illness taking away 75 per cent of her lung function and leaving her with skin so tight it flakes and cracks leaving bare flesh.
This month is Scleroderma Awareness month, and Miss Ottaway, of Anglesea Road, Kingston, said: “I have already paid for my funeral. “I have got it and there’s nothing I can do about it.
“If I didn’t have that attitude I would not be here today. I know I will go downhill very quickly. I do have to keep my chin up. Miss Ottaway’s quality of life has changed dramatically since her first diagnosis.
She said: “I used to cycle six days a week morning and evening through rain or snow. Now I can hardly walk.
“My lungs are rock hard. My skin gets so tight. My feet are like claws, I can’t open them anymore. “I would not wish this on anybody. It’s like turning your body into stone.
“I can’t do anything. I can’t work. I can’t really make dinner. I can’t touch anything hot. My life is nothing compared to what it used to be.
“I want people to know how devastating it is. People should know about it because there is no funding.
“There is all this funding for cancer and the heart but there’s nothing for scleroderma. Children can get it too. It breaks my heart.”
According to the Scleroderma Society, about 8,000 people in the United Kingdom suffer from the disease.
Fundraising coordinator Amy Baker said: “It is one of the most de-habilitating conditions a person could have. It affects people differently but for some it is effectively shutting down your organs.
“With cancer there is hope that you will be cured but when you are diagnosed with scleroderma it is a life-long condition. There is no cure at the moment. We are hoping that one day there will be one.”
If you are affected by Scleroderma, call the Scleroderma Society on 0800 311 2756.
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