Vitiligo is Nothing to Worry About: Are you kidding me?

I first noticed it back when I had just started high school. I had no idea what it was. I grew up near the beach where we were always playing outside. My friends all stayed nice and tan all the time. I looked just like all my friends until I started noticing weird little blank spots on my shoulder that not only wouldn't tan but easily burned if I spent too much time outside. To make it worse, the more tanned I got, the more noticeable the spots became. My mom said they were nothing to worry about. So I stopped worrying about them... for a while.

I was dragging the trash to the curb one night just as Ted, one of our neighbors, was walking his dog "Patches" (of all names.) When I leaned over to pet Patches, Ted said he couldn't help noticing the back of my neck and was curious to know how long I'd had vitiligo. I told him I had no idea what he was talking about. I'd never even heard that word before. It sounded like a word out of a science-fiction movie.

I told him my mom and she told me it was nothing to worry about. Ted said that was true - it wasn't going to kill me, and there was nothing really wrong with my skin, other than the look of it. He told me that he had a cousin who used to have it, which is the reason he knew about it. It took a moment before it hit me that he said that his cousin used to have it, so I asked. He said his cousin looked pretty normal last time he saw her, but didn't ask her about it; she just looked normal again. He said he'd ask her about it. So I thanked him, and went back inside.

When I came back in, my mom was watching TV. I sat down and asked her if she knew anything about vitiligo. She suddenly looked unhappy had me turn off the TV. I told her about what Ted said, and she said that he was right. I had vitiligo... just like her aunt and one of her great-grandparents. She said my pediatrician diagnosed it about three years before I noticed it. I asked her why she never told me. She said the doctor said worrying about it only made it worse, but most of all there really wasn't anything that could be done about it.

I mentioned that Ted told me his cousin had it and got cured. She said that was simply not possible, there was no cure. She said about all we could do was try using make-up to make it look closer to the rest of my skin. Great. I could imagine everyone at school stops teasing me for the weird looking skin . . . and starts teasing me for being a dude that wears makeup! She said she would setup an appointment with a dermatologist, but not to get my hopes up.

When I saw the dermatologist, he took one look at me and said I had vitiligo. The main options he listed were what I already knew; use make-up to hide it, or bleaching agents to make the unaffected skin look depigmented. He said either way my insurance wouldn't cover it because vitiligo was considered to be just a "cosmetic problem" - and they didn't cover cosmetic conditions. The news just kept getting worse.

When I talked with Ted again, he said he spoke with his cousin. She said her vitiligo had all but gone away since she started using some light box at a doctor's office. It had something to do with "narrow bands", but that was all he knew. I got the name of the doctor and scheduled an appointment with his office on the other side of town.

At that appointment, the first thing the doctor did was sit down and ask what I knew about vitiligo. He said that he didn't want to get my hopes up. Vitiligo is difficult to treat and there is no known cure for it. What makes one person better can sometimes make things worse for another. He told me that there was something new called "narrowband" light that was working wonders with his psoriasis patients and sometimes helped with vitiligo. He had another patient with vitiligo who it was helping. So I began narrowband phototherapy three times a week.

We did this for a while, but after a couple of months we were downright sick of the running back and forth to the office. I told the nurses I didn't think it was worth the trouble, didn't see anything happening and wanted to give up on it. One of them went away and came back with a photo in one hand and a Polaroid camera in the other. They took pictures of me when I first started using the narrowband machine, but I'd forgotten about it until she brought the camera out. She asked me to turn around, and took a picture of the back of my right arm. After it developed, she put that photo down and said this is what my arm looked like now. Then she laid the other picture down and said that was what it looked like when we started the treatment. The difference was really obvious with side by side pictures and it was the first time I'd felt happy for a long time. But that didn't do anything about the driving back and forth problem.

She asked if I thought I could manage using a system on my own at home. I thought she was kidding until she showed me the brochures for home systems. She said insurance sometimes covers some of her psoriasis patients, but they tended to reject claims for vitiligo treatments. She then pointed out that my mom had already paid nearly $3,000, and that was just for a couple of months. Even though the one I wanted from PhotoTherapeutix (now called "UVBioTek") cost several thousand dollars, it would pay for itself in less than a year. Needless to say, I got a home system. Best purchase ever.

That was about 15 years ago. Today, the only people who even know about my vitiligo are my dermatologist, my mom, and now my wife. We have a beautiful 4 year old girl, and her pediatrician recently diagnosed her with vitiligo. She asked me if anyone else in our family had vitiligo, and I said, "Yeah. Me." She quickly gave me another look and said I must have a very minor case. After I was able to stop smiling, I told her that I actually have a pretty advanced condition but I have been using narrowband light therapy at home for several years. She'd heard of narrowband, but not using it to treat vitiligo or even having a home system. I told her all about it and, I'm happy to say, she just installed a UVBioTek narrowband system in her own office; and it looks sharp.

While I wasn't happy to hear my daughter has it, I was thrilled to be able to tell her that something can be done.