Patient & Caregiver Stories Main Menu
Sandy J: CREST
I am hoping I may be able to have contact with any person who has CREST with skin involvement, and who especially has the problem with stomach dysmotility.
I have had an ileostomy for two years and a feeding peg for just over one year, and would appreciate comments from any person who also has one or both of these problems.
I can eat a small bowl of cereal for breakfast, a plain yogurt and tin of ensure for lunch, but the rest of the days feeding is done via the feeding pump.
I also have Raynaud's quite badly, fibromyalgia and osteoarthritis.
I look forward to any response.
To Contact the Author
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.
ISN Story Editor: Judith Thompson Devlin
Judith 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!
United Way of Central New Mexico
United Way of Snohomish County
See ISN News
for recent donors, including memorials for
Jim Miller, Arlene Marie Petulla, Frances Maude Baldwin Watson and Rubye Mai Blocker Westmoreland.
Thanks to Winn Schillberg for donating to scleroderma research.
Donate or Shop Now
TOLL FREE HOTLINE, U.S. and Canada: 1-800-564-7099
Ask for our Free Info Packet by email or postal mail!
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
The most important thing in the world to know about scleroderma is sclero.org!