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(English) Angiola: Progressive Systemic Scleroderma

(Italiano) Angiola: Sclerodermia Sistemica Progressiva

White Flower by Shelley Ensz I was diagnosed with progressive systemic sclerosis in 1997, when I was fifty-seven. The diagnosis was made at the first visit as the disease was already in an advanced state, and the signs of it were very evident.

The symptoms, that I had ignored for so long, had already been present for many years: thickening of the skin on my abdomen, swelling and pain in my hands with stiffness and ulceration, persistent cough, and general fatigue.

After an acute phase, today (April 2000) it seems that the disease has stabilized for the moment, but the damage has not cleared up. I suffer from marked lung fibrosis, which forces me to use oxygen continuously. I also have reflux esophagitis, mild cardiac involvement, serious visceral involvement and widespread pain. I take both steroids and vasodilator therapy with nifedipine, which has greatly improved the Raynaud's phenomenon in my hands.

This is my story. I would very much like to find other people who find themselves in a similar situation, so that we can take a load off one another's minds.

To Contact the Author

[email protected]
Story posted 4-24-00
Story edited 3-15-02

Translated from Italian
by Kevin Howell 6-17-02
Story edited V1: 8-1-03 JTD
V1 story posted 8-5-03

Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
(Italianio) Angiola: Progressive Systemic Scleroderma (Italiano) Sclerodermia dalla A alla Z

Cardiac (Heart) Involvement
Lung Fibrosis
Morphea Scleroderma
Raynaud's Phenomenon
Reflux Esophagitis

ISN Translator: Kevin Howell

Kevin Howell is the ISN Translator (Italian to English) for this story. He is a Clinical Scientist for Professor Black at the Royal Free Hospital in London.

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 Andy P: Surviving Son of Fibrosing Alveolitis Sufferer
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In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.


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