My story starts when we used to live in New York. My daughter was four, when I discovered a small spot on her left foot. I did not want to despair, but after awhile I took her to my dermatologist and he gave the right diagnosis of morphea.
I did not know anything about morphea in the beginning, so I went on the Internet and then cried for a few days. At the same time I started to look for a doctor. Even though I was living in a big city it was not easy to find the right one. Finally I found one of the best known morphea doctors and my daughter started her treatment. The doctor gave her a drug named Plaquenil. She took it for almost two years, but it did not make any changes or improvements. Then I went to another doctor and he advised me to drop all medication and just check her every six months.
When Sonia was seven, we decided to go back to Europe and I tried to find a doctor over here. We went to Poland and started her treatment there. I cannot say that it is better here but we receive different treatment. It has not helped so far, but I am hoping that finally something will start working.
In the meantime, the disease has spread on her whole left leg, some spots appear on her right leg and a few spots on her belly. I tried almost everything including unconventional medicine, but I still have the feeling that I missed something. I know there has to be some medication or treatment that can help.
If somebody would like to share your own experience with me I will be more than happy to answer and share my knowledge and my experience. Thank you.
Email: [email protected]
Story posted 10-20-03
ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Scleroderma Experts (Worldwide)
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.