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Maria: Scleroderma and Raynaud's

Ukraine

"I live in a small town and in a poor country. My doctors have no computers or medical magazines."

Hello! My name is Maria. I am fifty. I was born in a country, Ukraine, where winter was very cold. I was a healthy child. I liked snow and frost. I ran on snow, I rode on sleds and I made yeti (snowmen). I did not freeze and I was very happy.

What is happening with my hands now? They do not endure any cold. The color of my hands varies from white to dark blue. I cannot move my fingers well. It began fifteen years ago. The doctor says it is Raynaud's disease.

When my struggle began, I accepted a lot of medicine such as Trental and Halidorum, but the illness progressed. Dark stains and ulcers formed on my fingers.

I live in a small town and in a poor country. My doctors have no computers or medical magazines. I went to a medical center to a doctor of rheumatic diseases. She has helped me very much. She says it is scleroderma. I accepted the medicines Heparin, Prostaglandin, dexamethasone and Depen (penicillamine). The wounds on my fingers have disappeared, but other symptoms have appeared. I have grown very thin, so my clothes have become too large for me. I have lost 11 kilograms (25 pounds) during the last two years. My friends ask me how I manage to have such a good figure? They do not know that I was having injections of anabolic steroids.

My muscles have become so thin that I cannot sit on a rigid chair. I have put soft pillows on all the chairs in my room. Now I compete with my cat (who is faster) as to who will occupy a soft chair first.

I decided to search for a treatment, and I found the SCLERO.ORG web site with a computer. But this created a new problem for me, as the web site was only in English! What should I do? I studied English many years ago, so I decided not to despair. I am unable to read the text from the screen, so I printed it out on paper. Then I took a big dictionary and I slowly began to translate the text.

I say many thanks to Shelley Ensz and to everyone else who has made this web site. I have begun to learn a lot of new things. I want to cure my illness. I ask all doctors to help me! I shall wait for your advice!

I am a teacher, so I work at school. I feel numbness in my hands and I cannot hold a piece of chalk in my hand. I try to hide my ill hands from my pupils. My husband advises me to remain at home, but I want to go to work. When I come onto the school courtyard, the pupils run to me and cry to me, "Good morning!" Then I have no time to think about illness. I smile to them and I answer, "Good morning!" It is my salvation.

I want to have friends with the same illness as me.

To Contact the Author

ISN Story Editor: Judith Thompson Devlin

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!

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to: