Jess

At age 6 I acquired vitiligo as a small spot on my shoulder blade around a mole. My mom soon took me to Children's Hospital of Philadelphia where we were basically laughed at and told there was nothing we could do for my skin. However, we were given some kind of cream, but it ended up being useless. After that my mom decided to go to a health food store and talk to the owner about a natural treatment. I started taking vitamins, amino acids, orally taken oils, and other supplements for my Vitiligo. This method was helpful in the summer months but the pigment I had regained always went away when the winter months came because sunlight wasn't available. The next treatment I tried was Kalawalla, an orally taken pill. This treatment was found to be unsuccessful as well.

Growing up, as a kid with extensive vitiligo was hard for me due to the constant teasing and rumors that kids would spread in school about me. I would try to explain what vitiligo was, but none of them wanted to hear it. Eventually I asked my mom to come into my classroom and talk about it. I cried myself to sleep many nights, wishing that when I woke up my spots would be gone. The staring in public was also very difficult. I participated in gymnastics for 6 years and I always wanted to quit because of people staring at me, so I finally did. At the end of each year my class put on a show and during the last year's I pretended to be sick so I wouldn't have to wear a leotard and show my vitiligo. Going into middle school wasn't so bad as long as I carried myself with confidence. Kids were more willing to listen to my explanation of what vitiligo was now. I was still sick of the stares everywhere I went, so I started to dress differently so people would notice me more for my different colored hair rather than my vitiligo. This was fun for me but after a year I decided to stop because I would be starting a new treatment.

While searching on the internet for more information about vitiligo, I found the AVRF's website. I saw they had an upcoming conference the next month and asked my mom if we could go to Florida. She agreed to go. There I met lots of other kids with the same disease as I had. It made me feel even more confident about myself with others like me around. This was nice to see because I knew I wasn't alone in this and other people were going through just what I was. While I was there I met a doctor named Professor Schallreuter. She told me that she could see me repigmenting very quickly and easily if I were to use her treatment (pseudocatalase, or PC-KUS). When we came home my mom emailed her secretary and scheduled an appointment to see her in Germany because this was the only place to go for your first appointment. About a month later my mom and I were in Germany seeing the professor. The first day she talked about treatment and vitiligo. On the second day we had our pictures and blood taken to see how our bodies dealt with the phenylalanine we took. This treatment is a thin cream, which neutralizes the excess hydrogen peroxide on your skin. You have to put it over your entire body twice every day. I have to use a narrow band UVB light to activate the cream every day too. Sometimes I don't feel like doing my treatment but I know if I just get it over with then I will have more pigment and soon my vitiligo will be all gone. To boost repigmentation, Professor Schallreuter takes a large group of her patients from around the world to the Dead Sea in Jordan. I went in July of 2003 with my mom. I wasn't scared at all really about going there but I was excited to visit a new place, especially so far away from where I live in the US. While I was at the Dead Sea I met so many people from all over the world. After being there for 28 days they become like family to you. It was hard leaving everyone there but I knew in my heart that I would see them all again. My next trip to Jordan was in November of the same year. I was reunited with some of the people I was with before and met new ones too. Every trip to Jordan has been a great time for me because it included everything from sleeping under the stars in a desert to playing chess by the pool.

Vitiligo has made a positive impact on my life and I would never wish that I wouldn't have gotten it. This disease has made me a stronger person and has even allowed me to travel the world.