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Intractable P and Un-Insured
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.
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.
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
Well, I feel
better having touched shared my feelings a bit. Thanks
for giving me a place to do that. -Frances
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?
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
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
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