In 1962 when I was just twelve years old, my mother took me to our family doctor with what looked like a blister under my right eye. Our general practitioner (GP) made an appointment to see a dermatologist. By the time the appointment came through it had become bigger and spread. The dermatologist diagnosed scleroderma but nothing specific. They started me on treatments of some radioactive stuff that had to be painted on my cheek with a brush. This went on for a while with no effect. The next stage, a cocktail of drugs, was about twenty-four tablets a day with no effect. The next treatment was a very greasy cream sort of dark green in color to be massaged into the cheek, with no effect.
By the time I had reached seventeen and gone through all the name calling and taunting from other children, I found patches on other parts of my body which always seemed to be on the right side. I decided I wasn't going to go back to the hospital any more just to be told there's nothing new. The next stage was trying to cover up with make up but it doesn't work. One side of the face fleshy the other side little or no flesh.
Job interviews I found daunting and not very successful. One question that always came up was have I been burned or scalded. I'd answer, "No, it's a disease that sort of kills the flesh." End of interview, we'll let you know.
The last time I saw a dermatologist was around 2009, when I found out it was morphea.
For forty-seven years I have lived with scleroderma not knowing anything about it. I am now sixty years old. The body you can cover up but when it's your face it does scar you for life mentally and physically. People do stare but when they do I just give them a smile, some of them smile back others just turn away.
I find I shy away from having my photo taken or tend to turn my left side to the camera.
One thing I have to be thankful for is the type of scleroderma I have was never life threatening.
Story edited 07-11-2010 JTD
Story posted 07-13-2010 SLE
Photo by Hazel added 09-23-10 SLE
Page updated per Hazel 08-22-14 SLE
Story Editor: Judith Thompson Devlin
Emotional Adjustment: Coping
Emotional Adjustment Stories
Juvenile Scleroderma Stories
Parry Romberg's Stories
Medical: Diseases and Symptoms
Scleroderma Experts (Worldwide)
Symptoms of Systemic Scleroderma
Types of Scleroderma
What is Scleroderma?
SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses.
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: