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Ron: Fibrosing Alveolitis

My name is Ron and I am now sixty-five. I was diagnosed with fibrosing alveolitis in October 1996. Since then I have spent a lot of time in the hospital, including six weeks in intensive care.

I have also suffered a pneumothorax to the left lung which took over twelve days to re-inflate. I get very breathless just moving about. I also suffer from cervical and lumber spondylosis, osteoarthritis and osteopenia.

I cannot get around without a wheelchair. I drive a specially adapted estate car which has an automatic wheelchair hoist.

My local NHS Trust has been very supportive as has my hospital physician, who is the most caring person I have ever met.

I am on a high dosage of steroids, along with other medication. I also have oxygen at home, and a portable cylinder when I go out. I use a nebulizer four times a day, and a respiratory nurse visits me once a month.

My wife and two daughters and two son in laws have also been very supportive, as they are aware as I am that I am very lucky to still be here with them. I am a very positive person, to the point where my family calls me a stubborn old guy.

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ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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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