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Birilla: CREST and Bilateral Thoracic Outlet Syndrome


For Birilla by Shelley Ensz It all began in 1998, I was thirty-two 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

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
CREST Syndrome
Raynaud's Stories
(Italiano) Raynaud's
(Italiano) Sclerodermia

ISN Translator and Editor: Alba León

Alba LeonAlba León is the ISN Translator for this page. She is studying international relations in Mexico City.

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith 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!

Go to Blanca: Morphea

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.

International Scleroderma Network (ISN)