Communications (Jan/Feb, 1998)

Unaware of NPF
from Francis E.

Dear Ed: I have had this affliction since age 8 (40 years). I have been fired from jobs because of my appearance (flaking). I have tried just about every treatment there is. In conjunction with the psoriasis, I have had cancer twice, resulting in 25 surgeries, and the psoriasis builds on the scar tissue and is very hard to control.

Just call me flake also, as I have trouble keeping it off the floor, furniture, bed and the car seat. I hate visiting where I have to spend the night, fearing of flaky sheets the next morning.

I had no idea, even after having this for forty years, that there was such a thing as the National Psoriasis Foundation. I intend to go in depth into this site to see what I can find that the doctors don't tell you.

Thanks so much for providing us with a little humor. We all need to laugh at ourselves more. -Francis E.

*****

Ed's Reply: I'm glad Flake HQ brought NPF to your attention. Frankly, I can't imagine enduring P for 40 years without them. As far as learning stuff the derms haven't taught you, I guarantee it. (It's not so much that the derms don't share this information, or that they don't know it themselves ... They're just not proficient in translating it from the Latin, which is something NPF does superbly.) Remember while you're surfing: www.psoriasis.org is merely the tip of the NPF smorgasbord. Join to get on their mailing list. (I've found one of the unsung benefits of membership is the filtered advertising in Pharmacy News—one of their member publications. I don't know how in the world I would hear about the various products and treatments if it wasn't for this publication. I never see this stuff advertised elsewhere!)

Sorry about your experiences with C, but delighted you prevailed. The lesions resulting from surgery are known as the Koebner Phenomenon and I have several, too. It's aggravating because when I want to impress people with my "big surgery scars" all I have to show them is more psoriasis lesions. (I'm pleased to note, though, that the occasions for showing off my scars have subsided dramatically since I stopped patronizing singles bars.)

Stay in touch, Francis. Us "older guys" are living testament to the survivability of the Big P. -Ed

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