I'm a fifty-three-year-old woman. When I was twenty-one my illness began, my fingers turned white and I had pain in my bones. The diagnosis was Raynaud's Syndrome and I was cured with vasodilators.
After about a year I stopped the therapy. Many years went by and when I was about forty I began to have pus that would harden in the tips of my fingers and digestion problems (acidity, reflux and a feeling of having my whole digestive system blocked). The situation would only be better when I had diarrhea. I also had problems with my legs and it was really painful to do simple things like go out in my car; I thought I had rheumatism.
The situation in my hands got worse, and I couldn't take the pain, even when I just touched objects lightly. So I had a medical check and I was diagnosed 'Mixed Connective Tissue Disease related to Scleroderma '. Therefore I began an infusional therapy with ' Iloprost' with cycles of 10 days (6 hours of daily treatment) every four months. I saw an improvement, especially with my mobility problems, the calcifications in my fingers slowly diminished, but the gastric disorders remained, I also had plate-like calcifications on the inside of my knees, and some smaller ones in my elbows. They also did a a mammogram, and they found small calcifications. I get tired easily and I am not sure if this is because of the illness.
In my opinion, the doctors at the hospital where I have my therapy don't know much about the illness, and the only tests they run are blood tests for antibody research, every once in a while a capillaroscopy, and an electrocardiogram before each therapy. I don't think this is enough, also because I don't know my progress and how my other organs are doing.
But then I think, if this is the cure, what's the use in knowing it? At least I lead a calm life. I should say that, in spite of everything, I would consider I have a good quality of life. I only have a breakdown when I have to go to therapy (on the 30th day is the begining of the cycle) and when my fingers hurt (like right now), I scream in pain and I am nervous, so I came online to see if there are better cures. I ask if anybody knows less invasive and stressful therapies than Iloprost and, more precisely, if anybody has gone from this therapy to a newer one. Also, which tests are normally run for the illness. Thank you.
Story edited 01-27-06 AL
Story prepared 01-27-06 JTD
Story posted 01-29-06 SLE
Translated to English 01-28-06 AL
Email verified 02-01-11 SLE
Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Story Translator: Alba León
What is Scleroderma?
(Italiano) Gipi: Raynaud's, Sclerodermia
(Italiano) Fenomeno di Raynaud
Alba León is the ISN Translator for this page. She is studying international relations in Mexico City.
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:
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email firstname.lastname@example.org to request our Welcome email, or to report bad links or to update this page content.