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Narrowband UVB is My Miracle
from Suffering in Seattle

Dear Ed: I found your web site quite by accident while searching for other P info. I was humored by the graphic of the little scratching man, and had to see more. It's very refreshing to know there are people out there who have a need to not take themselves too seriously. I have been a P sufferer since I was 16 back in Bellingham, WA. It started with patches on my elbows and by the time I was a senior in high school and then in college I was a regular P-leper. I wore long sleeves all the time (even in summer) and did everything I could to avoid social situations where I would have to "expose myself to others."

I found some relief the summer when I turned 19 by using coal tar creams, exercising and losing some weight. It was in good remission during my 20's as long as I used topical meds and got some sunlight. By this time I was living in Utah and my P wasn't really an issue, it was in pretty good remission. I did have a pretty bad flair-up when I got sunburned and then started UVB therapy. (By the way I lived 16 years of my adult life in Utah.) It wasn't until I moved back to the northwest that I became a P-leper again. That was three years ago. Something about the damp climate just wasn't the best for my condition. By this time I had also gained some more weight and I was at my heaviest. I guess that was a big stress factor too.

Now I am 42 and have found the best derm here in Seattle. His specialty is P and he's very committed to helping me actually clear up my skin so I can have a better life. My treatment consists of UVB narrow band and special coal tar stuff my pharmacy mixes for me. He has done a great job in taking the time to explain my treatment options. His clinic has one of the only two narrow band UVB machines north of San Francisco. It has been a miracle machine for me. I am at the end of my initial treatment and hope that I will continue to have clear skin for some time.

I can't begin to tell you how much money I have spent on worthless treatments. Some Derms out there haven't got a clue what it is like to have this disease and how it affects your life. I think you should start the "FlakeHQ Lottery Fund" by making all the bad derms and pharm co's with bogus treatments give you all the refund money for all the treatments that never worked for all us P-lepers. Then you could hold regular drawings to send us to the Dead Sea or donate money to P research. Well maybe this idea is a little far fetched. But somebody is making money off of us! And we continue to suffer. Sincerely, -Suffering in Seattle

*****

Ed's Response: Now THERE's an idea, SeaSuff! All you derms who haven't managed to do a thing for flakers, and all you pharms that have ripped us off, send all your money to me and, on behalf of flakers, I'll ... I'll ... I'll....

We gotta talk, SeaSuff. Do you really think starting a lottery fund to send an occasional Flaker to the Dead Sea is a good idea? Maybe it would be better if I spent a year over there myself, first, just to really assess the situation. Maybe it would be better if I just bank-rolled the money pending a cure; then, when there's a cure, I'll use the money (at least the interest) to make sure every flaker can get the cure. Meanwhile, I'll do some investing ... manage our portfolio ... maybe we can set up a widows and orphans fund....

Kidding aside, it's great that you have found a responsive derm in your area. Though my general editorial policy prohibits me from publishing your derm's name, I will say for other Seattle-area readers that SeaSuff did provide it. E-mail me for the information if you wish to contact this derm.

I have only read a little about the narrowband UVB. I assume (dangerously) that it is a refinement and limitation of the light frequencies you are exposed to in order to maximize benefit and minimize risk of burning and toxicity.

NPF has reprinted at their web site one of their recent articles on comparative light therapies. Click here to read it. It does not address "narrowband UVB" but compares UVB with UVA and discusses a number of therapies.

Perhaps, SeaSuff, you could share a little more of what you have learned about narrowband UVB?

As a general reminder to readers, light therapies are considered to be one of the most effective P-therapies, and safe when administered under carefully monitored conditions. The palliative power of light therapy appears to be cumulative, which leads to one of the therapy's greatest inconveniences: A regimen of repeat exposures over a number of weeks or months is necessary and it is difficult for some people to maintain the schedule. Also, people who do not tolerate light well—for example, people who sunburn easily or who already have histories of skin cancers—are less likely candidates for this therapy. (I burn within seconds of exposure inside a UVB apparatus, which is why my derm determined this therapy was not for me.) There are several other e-mail exchanges about UVB referenced in the Archives.

I read, SeaSuff, that some flakers find the light therapy clears them up and they remain clear for long periods. I hope that is your case, too. Keep in touch! -Ed

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