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Susan Raby-Dunne: Daughter of Scleroderma Patient

My mother was diagnosed with scleroderma around 1970. She was taken around to meet a couple of scleroderma patients and told this was what she could expect. They were bed ridden and unable to feed or care for themselves. She refused that prediction and vowed she would not allow the disease to disable her.

She began to meditate faithfully using transcendental meditation twice a day without fail. She also changed her diet to mostly whole grain and vegetarian foods. She began to drink several glasses of water daily.

The effects she suffered from scleroderma were hardening of her fingers and toes and extreme sensitivity to cold and touch. If she got the slightest bit chilled, her fingers and toes would turn white and she would have to run hot water on them to restore circulation. If she stubbed her toes or banged her fingers on anything the pain was excruciating. Her facial skin became very drawn. She could not totally close her mouth to where youcould not see her teeth. She also had digestive problems.

In spite of those symptoms, she lived a fairly full and productive life for over thirty years after her diagnosis. She danced with my father and they were accomplished ballroom dancers. She painted and played golf until she was eighty years old.

About two years ago, she began to fail. She had serious digestive troubles, heart irregularities and a minor stroke. She died October 15th, 2002, at the age of eighty-four. She weighed less than seventy pounds.

If she had taken her doctor's prediction for her imminent demise to heart, back in 1970, she would have packed it in long ago. From what I have read on your web site I am not sure which type of scleroderma she had. It seems to be a combination of several types. She was a fighter and was able to live well with the disease. I think her attitude and belief were the most important factors in her survival.

To Contact the Author

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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