My husband had all kinds of things happening to him that just did not seem right. We went to doctor after doctor, to emergency rooms, and finally to a rheumatologist, since these strange symptoms came upon him about three months ago.
At one of the emergency rooms, I asked the doctor to just take an educated guess. He said, "I think he has scleroderma."
Neither one of us had ever heard of scleroderma, so I asked the nurse to write it down for me. Then I started surfing the Web and came upon your wonderful Web site! I truly think if it had not been for you I would not have found out that my husband has CREST. I would really like to say that instead of second-guessing, we now know what he has so we can deal with it properly.
I would like all the patients out there to be persistent. Do not give up! You can deal with this. Trust me, if I can, you can too! There are medications out there which help the symptoms. We are just starting to find this entire thing out. I have found that my faith really helps me through this.
My husband asked, "Why is this happening to me?" Now we know why: it is so that we can share with others out there who suffer with this disease. I have personally cried rivers over this as I felt so useless. But now I know we must share with all of you. Please do not give up, be persistent, and share with others.
New email address needed
Old Email Prefix:raumer
Vol. 2 matching edits 01-20-05 SLE
Story Artist: Ione Bridgman
Story Editor: Saba Sadiq
Story Webmaster: Judith R. Thompson
What is Scleroderma?
PDF Brochure: What is Scleroderma?
This story is featured in the book Voices of Scleroderma Volume 2
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.
Saba Sadiq is the ISN Story Editor for this story.
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.