Paul's Story
May 1999

My son, Paul, was born in 1978. In about 1990, at age 12, we began to notice a slightly discolored spot, about the size of a nickel, on his left jaw. The discoloration seemed to come and go. We also began to notice a slight depression in the same area. We went to a dermatologist who didn't know what it was. She prescribed a topical ointment, which had no effect.

After about a year of observation, the dermatologist suggested that Paul undergo a biopsy. We agreed. The biopsy was inconclusive, and the dermatologist was still baffled. We finally gave up.

At about age 16, we noticed a thinning of the skin on the left side of Paul's face, mostly on his jaw. The area is about 3" by 2". In 1997, when he was almost 19, we became convinced that something was really wrong and took Paul to a variety of doctors. Finally, another dermatologist suggested that we take him to a dermatologist at the University of California, Davis Medical Center, who specializes in unusual cases. This doctor told us that he thought Paul had Romberg's. We were also having Paul examined by a rheumatologist. Together, they decided to treat Paul with Plaquenil, an anti-malarial which is often used to treat rheumtolgy conditions. The doctors had not seen the medication used with Romberg's but decided that it was worth a try. Paul took the medication for about 18 months but it seemed to make him sick, particularly after hard physical exercise. He stopped taking it in 1998, at age 20. Paul seems to have been stable since 1997, when he turned 19. He has not had any surgery. For what it's worth, Paul had a lot of headaches, especially when he was younger.

Whit
California, USA

Feel free to leave a message for Whit at rombergs@hotmail.com.