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Sandy: Diffuse Scleroderma
My disease progressed rapidly.

Hanging Candles by Shelley Ensz After years of complaining about various symptoms to doctors, I was diagnosed with diffuse scleroderma in 1993.

My family doctor stated that he was not qualified to treat me and sent me to a research and teaching hospital for treatment. The rheumatologist and dermatologist that treated me were wonderful in trying to explain to me all of the symptoms of scleroderma.

Within the first month of diagnosis, the tight, shiny skin appeared on my chest, belly, upper legs, arms and face. I was placed on D-Penicillamine in hopes of slowing the progression of the disease. I was also placed on an antidepressant, something for the acid reflux, pain and anti inflammatory medication. My disease progressed rapidly. Within months it became difficult to walk due to muscle weakness and fatigue. My hands were so swollen it hurt to grip a pencil. I was devastated because I was a school teacher. I could no longer go outside for recess because of the Raynaud's.

I had a severe reaction to the D-Penicillamine and had to be taken off of it. The rheumatologist then placed me on Methotrexate. I tolerated it well but after one year decided to quit the Methotrexate as I had mouth ulcerations and had dropped weight.

I went along well for the past four to five years and even thought I had the major organ malfunction beat. This past week, I found out I am in partial kidney failure. Through careful monitoring of my blood pressure and medication, I hope to avoid dialysis.

To Contact the Author
Sandy
New email address needed 01-24-05 SLE
Old Email Prefix: sansundquist
Edited 03-23-04 SLE

Story Artist: Shelley Ensz
LINKS
Acid Reflux
Diffuse Scleroderma
Ineffective Treatments: D-Penicillamine
Kidney Failure
Raynaud's
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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Go to Sandy A: CREST Syndrome
 
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