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Sandy J: CREST
New Zealand

Lemon and Pink Rosebud by Sherrill Knaggs, ISN Artist 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
Sandy Jack
Email: sandyanddave@xtra.co.nz
Story edited 06-23-06 JTD
Story posted 08-21-06 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Thompson Devlin
LINKS
CREST
Dysmotility
Fibromyalgia
Ileostomy
Raynaud's
Raynaud's Stories
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs 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 Rose ThompsonJudith 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!
New Personal Stories
Maria T: Daughter of Deceased Scleroderma Patient (Italy) He, upon looking at my mom's face and hands diagnosed her with sclerodermia, in fact he took care of her until the end...
(Italiano) Maria T: Figlia di una Paziente Defunta di Sclerodemia (Italia) Lui, come vide a mia madre disse "tu hai la sclerodermia", guardandole le mani e la faccia...
(Update) Dee B: Limited Scleroderma/CREST Syndrome (South Africa) There is so much I want to add to my original letter after reading more of other peoples stories. I am certainly not getting better but wish I was...
Tessa: Morphea The nurse just told me that I have morphea and knew nothing about it and she told me to look online for information...
More New Stories: August-November 2009
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Go to Sandy R: Spouse of CREST Patient
 
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