I am thirty-nine years old, and when I was thirty I was diagnosed with an undifferentiated connective tissue disease, which was later specified as Sjogren's Syndrome.
Now I take a small quantity of cortisone and immuno suppressors per day. I have learned to live with muscular pain and a perennial tiredness, but I try to lead a life as close to normal as possible, even if all this limits my doings quite a bit.
The worst part at the beginning was the total lack of clarity on the part of medical personnel, and when I still had not realized that this was an illness for which no cure has been found, this was told to me in a very direct and traumatic way.
Everything I know about the illness I have figured out myself. Perhaps doctors should take psychology courses periodically in order to try to understand and make themselves understood to patients.
Greetings, and I hope research gets ahead.
Laura Villi Email: [email protected] Story edited 03-23-2010 JTD Story posted 04-15-2010 SLE Story Artist: Shelley Ensz Story Translator: Alba León Story Editor: Judith Thompson Devlin |
LINKS Italian: Cos'è la Sclerodermia Sindrome di Sjogren English: Sjogren's Syndrome Sjogren's Stories Undifferentiated Connective Tissue Disease (UCTD) Medical: Diseases and Symptoms Scleroderma Experts (Worldwide) Sclero Forums *Online Support Group!* Symptoms of Systemic Scleroderma Types of Scleroderma What is Scleroderma? |
Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
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!
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