"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.
New email address needed 11-03-06 SLE
Old Email Prefix: teplin
Story edited 10-23-02
Story posted 10-26-02
Russian Version posted 3-17-03
The Ukraine is in Eastern Europe, bordering the Black Sea, between Poland and Russia.
Animated cat graphics this page are from the former Cartooncottage.com site, for noncommercial use only.
Maria: Russian Version
Scleroderma Clinical Trials
ISN Team Members
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Mary Jo Austin, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Michael and Patricia Donahue, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Alice Gigl, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Donna Madge, Michele Maxson, Barry and Judith McCabe, John Moffett, My Tribute Foundation, Joan-Marie Permison, John Roberts, Margaret Roof, Maryellen Ryan, Mayalin and Kiralee Murphy, Nancy Settle-Murphy, and Bruce and Elizabeth Winter.
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:
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