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D.M. Hoffe: Progressive Systemic Sclerosis (Scleroderma-CREST)

At first the symptoms were very confusing with joint swelling, extreme fatigue then severe reflux.

I was diagnosed with scleroderma in March 1990. At first the symptoms were very confusing, with joint swelling, extreme fatigue, and then severe reflux. My hemoglobin dropping to 57, and my iron levels were practically nil.

After an endoscopy it was discovered I have watermelon stomach. After twenty-two laser treatments in twenty-four months, plus taking Losec and Prepulsid, the symptoms started to subside for awhile, only to return many times, resulting in iron injections, iron transfusions and many blood transfusions.

My medications were changed to Prevacid and Domperidone and they seem to keep it under control to a certain extent, except now I seem to be developing polyps. I have had four removed so far, and they all were benign.

I have some skin tightening on my hands, mainly the fingers, and on my face I have numerous telangiectasias. Plus I have finger ulcers. My feet are presenting me with lots of problems since the fat pads underneath the toes have worn down, so walking is very difficult as well as finding shoes to wear. Swallowing is becoming a little difficult for me, especially breads, meats and anything dry. Fatigue continues to be a big problem, plus muscle weakness in my arms and legs, and Raynaud's.

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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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