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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: dillasgerald@sympatico.ca
Story edited 01-26-05
Story posted 01-28-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
Finger Ulcers
Raynaud's
Reflux
Limited Scleroderma
Skin tightening (Sclerodactyly)
Swallowing Difficulty (Dysphagia)
Telangiectasias
Watermelon Stomach
PDF Brochure: What is Scleroderma?
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs 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 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
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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