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Debilitating, Intractable P and Un-Insured
from Frances D.

I recently stumbled across your web page and was relieved to find out that there is a place to which I could write if only to vent about this disease that I share with you all.  I am a 41 year old female and was diagnosed with P at 15. 

In my mind, there are 2 types of psoriasis:  The type that everybody else in the world has and the type that I have.  

I guess I feel this way because I suffer from severe psoriasis that involves 100% of my body.  Usually I flare every 18 months or so, but I have had 2 episodes this year alone. 

When I start showing the first signs I am immediately filled with dread because I know what's coming.  It attacks my body so violently that not only is my skin affected, my whole body swells so much that I am bedridden.  Basically there’s nothing I can do but ride it out. 

A flare-up usually lasts from 6-10 weeks.  It’s a horrible experience, it’s very painful, and I shed so much skin that I feel like a reptile.  I have had every treatment available through the years.  I seem to do good with Soriatane, but I am one of the unfortunate ones that does not have medical insurance and therefore must do without because of the outrageous price of these pills. 

It's very frustrating to know that there is help out there for me but I just can't afford it.  I know that the majority of people who suffer from P don't have it as severe as I do, and that's why I think my P is in a class by itself.  I know my skin will eventually clear up, but it traumatizes me every time because of the intensity of these attacks my body.  It definitely has total control and I can do nothing but suffer through it.  I could deal with some flaking of my skin, but it's all the other things that come along with it.

Well, I feel better having touched shared my feelings a bit.  Thanks for giving me a place to do that.  -Frances D.

*****

Ed’s Response:  I’m glad you found us, Frances, and shared your story.  Your P sounds like erythrodermic P (also called exfoliative P), which is rare, and your situation — un-insured — makes it intolerable.  Have you pursued any local, State or Federally-supported aid programs? 

My greatest fear is that so many of the most needy flakers will not have access to the most effective therapies.  Yesterday, for example, I took my first dose of Enbrel, the new (for skin psoriasis) biologic drug that costs over $1,300 per month.  This would simply not be possible for me without insurance.  (I paid $10 for a month’s therapy.)

It makes no sense to me that we have not eliminated health care disparities in this country.  As the costs keep rising the crisis escalates.  As our population ages (because of baby-boomers) the crisis escalates even more.  While I appreciate our war on terrorism, I am more terrified by the bleak future of our public health.  Unfortunately, we have built a health care industry full of lethal disproportions and the old line, There’s still no better place in the world to be ill than the U.S. is on the cusp of falsehood — or perhaps has already crossed over.  As foolish as it seems, we have found it impossibly difficult to focus on the fact that without a healthier population, everything else we deem important — productivity, prosperity, leisure — is at very real risk. 

But I don’t want to preach.

I hope that you can find a way to obtain treatment, Frances.  Perhaps the place to start — if/when you’re flaming — is your local hospital ER.  Otherwise, it may require a telephone expedition through the maze of bureaucracy responsible for public health in your area.

Please let us know how you get on.  -Ed

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