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Susan Raby-Dunne: Daughter of Scleroderma Patient

She was a fighter and was able to live well with the disease.

Angel Dancing for Susan by Shelley Ensz 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
Susan Raby-Dunne
Email: bonfire@xplornet.com
Story submitted: 12-05-02
Story posted: 1-8-03
Story edits posted: 1-17-03
New email address posted: 08-04-09 SLE

ISN Story Editor: Judith Devlin
ISN Story Artist: Shelley Ensz
LINKS
Scleroderma
Scleroderma Survivors Stories
ISN Story Editor: Judith Thompson Devlin
Judith Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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