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.
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
Cos'è la Sclerodermia
Sindrome di Sjogren
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.
United Way of Central New Mexico
United Way of Snohomish County
See ISN News for recent donors, including Pam Hop, Margaret Roof, Winifred Schillberg, Arnold Slotkin, and Juliet Youkhana. Plus donations in honor of Kim Thwaits, and in loving memory of Marta Marx, Jim Miller, and Arlene Marie Petulla.
Click Here to Donate or Shop
or click on the floating green DONATE sclero.org button.
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: