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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
Need new email address.
Returned as "Not a valid mailbox "
Old Email: sansundquist@uplogon.com
Edited 03-23-04 SLE
Email note posted 01-24-05 SLE

Story Artist: Shelley Ensz
LINKS
Acid Reflux
Diffuse Scleroderma
Ineffective Treatments: D-Penicillamine
Kidney Failure
Raynaud's
New Personal Stories
Mila: Morphea Now I am twenty-five years old, and that spot has grown throughout my right leg and on one side of my belly button...
(Español/Spanish) Mila: Morfea Hoy en día tengo 25 años y esa mancha está en toda mi pierna derecha y al lado de mi ombligo...
(Español/Spanish) (Update) Jeins: Esclerodermia Sistemica Difusa y Dermatopolimiositis Ya había escrito mi historia hace 3 años cuando recién estaba pasando por la enfermedad. Para quienes no lo saben tengo esclerodermia y dermatomiositis desde los 19 años.
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...
More New Stories: November 2008
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