Mail (August, 1998)

There'd Be A Cure If Bill Gates Had It!
From Carol S.

Ed: I found you today. You obviously have more stamina and whatever it takes day to day to deal with your psoriasis.

I have had this disease for 40 years (yes 40, that's not a typo)! And I don't look forward to another 40 with it, to be sure. I read the other day there are 6,000,000 Americans afflicted with it, and 150,000 are joining our ranks every year. How exciting, let's have a party.

I also read that psoriasis causes death! How? Through suicide?

I have seen every top dermatologist Orlando/Central Florida has to offer. I have been to Shans Hospital in Gainesville, FL. I have gone thru the cortisone treatments, PUVA, Psoralen, Methotrexate, Dovonex, Lidex, etc, etc, etc. Temporary relief at best.

Maybe through all of your connections, you could/would query the following: Herpes simplex (cold sores) is a virus manifesting itself through skin eruption; as are the measles, chicken pox and small pox. Has anyone checked your white cell count to see if you have a viral infection which drains through the skin?

It's odd, racoons are born with rabies; parrots are born with parrot fever. Unless a trauma happens to either, their diseases are kept in check forever. The majority of people I know who "flake" have become that way only after a trauma such as a car accident, a hysterectomy, child birth and so on. I realize babies also have psoriasis so how can their affliction manifest itself, with no trauma present? Who is to say, that a baby receiving their diphtheria, typhoid, and all other baby shots don't react to them as a trauma on their little bodies? Maybe these traumas create our rabies and parrot fever.

An inherent virus dormant for years only to manifest itself through trauma (physical or emotional). Heck, the medical world has pretty much adjusted to the fact that an ulcer is a virus. (By the way I had a perforated ulcer in 1987—blew a hole in me the size of a quarter). After 9 days and major, major surgery in the hospital, I came home literally with no psoriasis. I was free and clear for 18 months (never that long in my life).

Theory—the medications I received in the hospital to treat my viral ulcer also worked on the psoriasis. I don't believe this is something we should grin and bear. I am sick and tired of spending good money after bad listening to trained professionals telling me that the problem I have is not curable, and that I should live with it. After 40 years god only knows I've lived with it.

I would like to suggest that maybe you set up a REWARD fund—asking a dollar donation from everyone who suffers flakes—then run an ad in the New England Journal of Medicine. "REWARD: The first researcher who comes forth with a cure, wins $1,000,000+." Get to someone through a place everyone seems to live today—their pocketbooks. Obviously, money talks.

If you read this, I appreciate the time it took you to do it. I'm just a 54 year old woman, living in the sunshine state, trying to understand why we can put a man on the moon, clone sheep and cows, correspond around the world in sections, and yet cannot come up with what I consider to be a debilitating, humiliating, embarrassing, painful, chronic condition like psoriasis.

Betcha if Bill Gates had it he'd find a way to get rid of it. -Carol S.

*****

Ed's Response: Current thinking is that psoriasis, or the proclivity to have psoriasis, is indeed something with which we are born, and that typically some sort of trigger is required to make it manifest. The babies born with psoriasis raise questions, but not by me. If physical trauma is a trigger (and we know it is), couldn't the birth experience be considered traumatic? I don't know enough about the epidemiology of virus infections to say why it's been pretty much ruled out as a the root cause of psoriasis ... but I do have several blood work-ups a year and no one has indicated an unusual virus.

I, too, have heard that P causes death, but in the stories related to me those deaths are fomented by (a) infections attracted through lesions, or (b) complications derived from treatment therapies.

Your idea of raising funds and offering a reward for a cure is intriguing. I suspect a compelling reward would have to be considerably more than $1,000,000. Maybe $100,000,000. Still, if all 6-million U.S. psoriatics contributed $17 each, we'd have that much! But ... Do you want to hear what I think is going to happen, Carol? Whether or not the cure is catalyzed by a reward, or Bill Gates becomes psoriatic and pays for the discovery himself, I suspect the cure is going to be too expensive for all but the most affluent 1% of the psoriasis population.

I think it will take a generation or two before the cure diffuses broadly through the psoriasis population. And I don't believe cost will be the only inhibiting factor. Availability will be a problem. And lots of "but ... ifs" will probably be associated with the cure. "But, if you have [some other medical condition], you can't undertake this cure...."

Further (and after this I promise to step down from the soap box), I think an effective palliative is more likely to come before a cure. By "effective palliative," I mean some agent that will inhibit lesions without eliminating our proclivity to create them. I think we are likely to see a few generations of psoriatics walking around in complete anonymity because they pop some pill daily, or take some shot, or spread on some goop, any of which will get rid of the lesions, but who are flakers nonetheless. This may happen almost in tandem with a cure, but the palliative is likely to be more affordable than the cure, thereby more widespread. Okay, I promised to step down. But there. That's what I think. -Ed

 

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