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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.

Yellow Daisy by Sherrill Knaggs, ISN Artist 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.

To Contact the Author

D.M. Hoffe
Email: [email protected]
Story edited 01-26-05
Story posted 01-28-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Finger Ulcers
Limited Scleroderma
Skin tightening (Sclerodactyly)
Swallowing Difficulty (Dysphagia)
Watermelon Stomach
PDF Brochure: What is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill 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

Photo of JudithJudith 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!

Go to Dodo: Limited Systemic Scleroderma

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.

International Scleroderma Network (ISN)