I was diagnosed with linear scleroderma (en coup de sabre) in Romania forty-one years ago. I feel I have to share with you my experience, mostly to give courage to the families with children diagnosed with scleroderma. Somehow, I feel it is my duty to tell you my story.
As often presented in the medical books, at age eleven, I had a violet stripe, which separated my forehead into two parts. It appeared quite suddenly, and my family and I went to see a dermatologist. The diagnosis of juvenile scleroderma shocked my family but, luckily, not me. I was just a kid then, a fourth-grade student, and I felt different because everybody told me how rare my disease was. Everybody kept telling me how lucky I was to have this particular form of the disease, and they were right. Meanwhile, I think I was grateful that it was not a difficult-to-bear disease as I was able to learn and play and to have quite a normal life.
For two months, I was hospitalized in Bucharest where the doctors were very kind to me, made me pictures, and treated me with medications. I will always remember one doctor. His name was Bolkonski. I had been reading Tolstoy's War and Peace, so I was excited to meet someone whose ancestors were so famous.
As for my disease, the color of the stripe faded, but the skin was still thick and hard and adhered to my cranium. My life continued like any child and continued like any teenager, except that I always had hair tangles on my forehead where the strip was. It still is very thin, hard and adhered.
I used to be a good student, and I entered the university. After finishing my studies at age twenty-three, I observed that the strip slowly became pink and I was losing hair. It was my first year as a country secondary school teacher in my hometown. I was again hospitalized for three months. My doctor gave me vasodilators, blood thinners, and other therapies. Because my blood tests were not the best at the beginning, the treatment was long, but not painful. Thank you for your help, Dr. Pantea, wherever you are! It was only then I realized what sort of disease I have had. I will explain what I mean by 'had' in the past tense.
From then on, I frantically read whatever I could find about scleroderma, and I felt quite puzzled that I did not feel anything strange, not even fatigue. I must confess I was scared to death that something could go wrong and how awfully wrong.
When I was about thirty-three years old, my collagen and antibodies blood tests became quite normal again, so I took only some herbal pills from France and a related unguent.
As I arrived in Canada almost five years ago, my then-future husband took me to Dr. Lee, a well-known rheumatologist in Toronto. Dr. Lee declared me both very lucky and cured from my juvenile scleroderma. That is why I used the word 'had' in the past tense. Deep, deep in my soul, I still fear a recurrence of any kind.
How did I manage to live with scleroderma? Luckily, I managed to always keep myself busy by teaching and trying to have a family of my own in Romania, and by refusing to meditate too long about the scleroderma. Now I am busy with my new family, and I am continuing my studies. I try to enjoy life as I always have tried, and also give the world a smile and a kind word as often as possible.
Deep in my heart there is a feeling of guilt for the people who were not as lucky as me. I wish them all a lot of courage and trust in their selves as well as in their families and friends. I will always remember the words of an old and very nice lady I met in Greece who said, "Never give up!"
Please, my friends, my family, and all the people involved one way or another with scleroderma; you are also my family. "Never give up!"
Email: [email protected]
Story posted 12-26-01
Story edited VH1: JTD 9-5-03
Story Artist: Shelley Ensz
Story Editor V1: Judith Devlin
Scleroderma de la A la Z (Romana)
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.