We have had quite a journey to get to where we are now. I will try not to bore you with the details, but I really need to know if there is another step we can take to change or at least slow down this process.
It all began after she fell off the monkey bars at school. She came home with an enormous bruise on her chest. I immediately took her to her pediatrician. They took X rays and said, "Don't worry, it's just a bruise."
After a length of time passed and this bruise never changed, we went back to the doctor. I was told again to 'just watch it.' Well I watched it and every bit of normal skin pigment was removed in that spot, so we went back to the doctor and they said there was direct trauma done to her skin, so do not worry, it will be fine.
One year later, after several more doctor visits, I insisted on seeing a specialist in Boston. We were sent to the dermatology department and my daughter was diagnosed thirty minutes into her appointment. From there we were sent home with a topical steroid and an appointment to see the doctor every month.
Her 'spots' just kept multiplying. After our fourth visit with the dermatologist, and trying several different creams, we were referred to the rheumatology department. We have been there for about eighteen months. My daughter was then put onmethotrexate. Her dosage has gone up and up, but the spots just keep getting bigger and there are more of them. She went there with one spot and now she has them all over both arms, one hand, her back, knee and thigh. She has not lost any mobility and she only has them on her skin, but no one has convinced me that that's all it will be.
If you have any suggestions, no matter how funny they sound, please contact me. Thank you and I hope to hear from you.
New email address needed.
Old Email Prefix: ericab
Story posted 1-27-03
Email notes 01-18-05 SLE
Story Artist: Ione Bridgman
Story Editor: Judith Devlin
Caregiver's Stories Juvenile Scleroderma
ISN Artist Ione Bridgman created original artwork to illustrate this page. She is 90 years old, and lives in New Zealand. Her lovely paintings illustrate many of our pages and the covers of our Voices of Scleroderma Book Series.
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.