Communications (Jan/Feb, 1998)

Flaking in Brazil
from Alexandra

Dear Ed: I must tell you I was very surprised to run into a page like yours in the Internet. It's just great to be able to communicate with people from other countries who also suffer from this "damn" disease. And the way you talk about it is just so different. It's good to know that there are people like you to help us handle it.

Well, I guess I should introduce myself, right? My name is Alexandra (Alex), I'm 23 years old, I'm Brazilian and study law. I'll be graduating in August 1998. I've had psoriasis since I was 19. It mainly appears on my scalp and I really, really hate it. I had never heard of it until I went to the dermatologist for the first time to check on a little red spot that had appeared on my belly. I thought it was some sort of an allergy or something and that within two weeks I'd be ok. When she told me it was psoriasis it sounded very strange to me. "What a weird name," I thought. After the diagnosis she told me to take some medicine (those colorful pills, you know). In a week's time my head started feeling like a deposit of mountains. There were actually hills on it. Do you know what I mean? Oh, my gosh. I just couldn't understand that. Guess, what she told me! She said it was okay because the organism was responding and it would all come out. She even said I'd be cured in six months. That kept me going for all this period. I had something to fight for because I'd eventually get rid of it. So, I held onto my belief and accepted those horrible white hills on my head. I took a vacation, went to Rio. There my aunt put some baby oil on my head and took all those "hills" off. Boy I was definitely happy. I though I was free of that forever. Too bad it wasn't true. In a nut shell, I've been living with this disease for over 4 years and I'm hoping to learn with you how to keep the good humor, because I just cannot accept having to look at my head every morning and see a bunch of flakes falling down constantly. The worst is when you're talking to people and they just stare at your hair wondering what the heck that is. It feels really awful not being able to deal with it in a nice way. It destroys your self confidence, doesn't it? Believe me, I'm doing my best to learn how to live with it without feeling like the last creature in the world. Now I'm much better. In the beginning, all I could do was cry and ask why God had given me such a heavy cross to carry.

Sorry for bugging you, but I know you understand me. That's what we need: someone who understands us.

Thank you. I'm looking forward to hearing from you. -Best wishes, Alex

*****

Ed's Reply: Without a doubt, psoriasis of the scalp can be the most socially debilitating. Alex, go to the Archives here and check out "Scalp P has Got to Go!" In there I recount the only treatment I've found to work for me. If you can't find a derm/pharmacist combo near you who know about it, let me know and I'll see what further illuminations I can pry out of my Dynamic Duo. Let me iterate, however, the "scalp cocktail" I've found to work is certainly no cure, and it's expensive as well as messy ... but what else is new, eh?

Sounds to me like your initial derm was leading you down a primrose path. Unfortunately, it's a risk we all faced in the beginning. Sometimes the unwitting sufferer, paired with an unknowing derm, can too easily be characterized as "Dumb and Dumber." Derms don't like to look foolish (does anyone?) and in the early stages a mild case of P can be easily misdiagnosed. (Fungus and seborrheic dermatitis are just two of the ailments often confused with psoriasis.) I suggest you buy yourself a little notebook, or a recipe-card filing system, or start a card-file-type database on your computer, and start keeping track of everything you try. How can this help? Well, here's an example: A few months back I met with a new derm, a recent addition to the staff at the dermatology clinic I currently patronize. She had my file in her hands when we met, but it's inhibiting, looks slightly like you would expect the manuscript version of Crime and Punishment to look, and I won't fault her for not keeping me waiting so she could review it in depth. Anyway, she didn't cotton to the regimen I've been following to manage my head lesions. She thought my steroid creams might be too potent to use as frequently as I was using them "up there." She said, "I'm going to prescribe something milder" and scribbled the prescription. I didn't pay any attention to the prescription until I got home. The name of the formulation sounded familiar and sent me into my own records. Sure enough, I'd used this stuff with absolutely NO success back in ‘92. Sometimes these things are worth retrying. This one definitely isn't.

I'm all too familiar with your scalp "mountains." You might think you're shedding your P-flakes like crazy because of the dander, but actually it's more difficult for scalp lesions to get rid of the excess dead skin than the lesions on less hairy parts of your body. It's like dead stuff piling up on a forest floor, protected there by the trees from the natural "sweeping" of wind et. al. "Digging" is literally what we are all inclined to do when the mountains pile up. But it almost always back fires. Your aunt's oil treatment softened the flakes, aided their safe removal, and that's the key. When you're beloved aunt is not around, try letting a good tar-based shampoo soak for as long as possible. (Most of the manufacturer's say 10 minutes or so; I try to let the shampoo soak in for 30 to 60 minutes.) Then brush with one of those hair brushes that have smooth beads on the end of the bristles. It feels good and is less likely to damage the living tissue beneath your mountains.

Good luck and stay in touch! -Ed

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