At this point, what I know about this disease is what I have found on this website. This is a wonderful site for people. I feel much better mentally for being in the know.
I have been sick for five or six years, telling doctors how much pain I have and that my fingers are sensitive to cold. I went to three doctors in six years and finally I was referred to a specialist.
I am new to this so I do not have a lot of information to contribute. At this time, my doctor has me on medication for the Raynaud's, and has warned me to stay warm at all times.
I went back to the doctor in October and was told I also have fibromyalgia. I have irritable bowel syndrome (IBS), sleep apnea, thyroid problems, and diabetes. Maybe this information will help with statistics. It seems lots of people have IBS and sleep apnea before symptoms of scleroderma.
I am reading some things online that are frightening. What am I to expect?
Email: [email protected]
Story posted 10-28-01
Story update posted 11-18-01
New email address 7-28-02
Email updated 10-13-02
Email updated 11-29-02
Story edited 7-14-03 SLE
Story edited V1 8-5-03 JTD
Story posted V1 8-5-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
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, Volunteer, or Donate.
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 or update any page content or links.
Toll Free US/Canada Scleroderma Hotline: 800-564-7099