Well, where do I start? I am a forty-two-year-old male. I have had scleroderma for two and a half years. It was first diagnosed as an "atypical phenomena", but in reality turned out to be Systemic Sclerosis.
Luckily for me I lived in New York City, and I was put in touch with Dr. Harry Spiera, a rheumatologist who runs the scleroderma clinic at in New York City. He knew exactly what was happening and how to treat me. This man truly is an angel.
I had a bad time of it for the first one and a half years with esophageal involvement, myositis, shingles, osteoporosis, interstitial lung disease, Raynaud's, etc., and I have been on more medication than I care to think about. I am in pain most of the time.
But what I have learned is that I can compensate and live with anything. A German philosopher once wrote, "That which does not kill us makes us stronger." How true that is.
For all of you who have recently contracted this illness, my heart and prayers go out to you. But remember late at night when we feel sorry for ourselves and that little voice in our head says, "Why me?", the answer that comes to me is "Why not me." I do not like it, but I deal with it and I spare my family and friends the "woe is me" stories.
The only bit of advice I can give is stay mentally tough, see your doctor regularly, and live your life the best way you can. God Bless.
Story posted 8-9-02
Story Artist: Ione Bridgeman
Story Editor: Judith Devlin
Interstitial Lung Disease
Mt. Sinai Hospital
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series .
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 firstname.lastname@example.org to request our Welcome email, or to report bad links or to update this page content.