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Birilla: CREST and Bilateral Thoracic Outlet Syndrome
Italia

For Birilla by Shelley Ensz It all began in 1998, I was 32 years old. Two of my fingers turned white. At first I didn't think much of it, but when I saw the problem continued I talked to my doctor, she told me it could be Raynaud's Phenomenon. So I took some tests that confirmed the diagnosis.

But the problems were only begining and I didn't know! After that I got diagnosed with bilateral thoracic outlet syndrome, and because of this I had to have surgery four times in six months. Afterwards, in 2000, I began to have vasodilator therapy at the hospital (flebo with alprostar). At first these therapies were done for 28 days; after a while they were for one week a month throughout the year.

A year and a half ago I began to feel a lot of pain in my right hip. After several exams I was diagnosed with a form of arthritis that set me back yet again. It affected my back and shoulders, ankles, and fingers. I have decided to have surgery again (in January), to try and solve at least part of Raynaud's. I will have two different stellectomies, and I hope to God it all turns out well.

To Contact the Author
Birilla
Email: Withheld by request
Story submitted 12-22-05
Story edited 01-29-06 AL
Story prepared 01-29-06 JTD
Story posted 01-29-06 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Story Translator: Alba León
LINKS
CREST Syndrome
Raynaud's
Raynaud's Stories
Scleroderma
(Italiano) Raynaud's
(Italiano) Sclerodermia
ISN Translator and Editor: Alba León
Alba Leon, ISN TranslatorAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.
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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