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.
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
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.
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
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.
SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, or Volunteer. Donations may also be mailed to:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected] to request our Welcome email, or to report bad links or to update this page content.