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Hello Mr. Dewke:
I am a 26 year-old from the UK who has suffered from P for 9 years.
I have just finished reading the message from Al L. (Coming
Out as a Flaker) and I was amazed by the similar experiences we’ve
both been through.
I first realized I had
P while I was in Australia. Within
a matter of weeks it spread rapidly, especially on my face. I had a brief
remission of around two months but it has been with me ever since: body
(60%), scalp, every nail, genitals and skin trauma sites through the
Koebner phenomenon — and arthritis. Thankfully, at this moment it’s
not on my face.
Your web-site is a
God-send and the many contributors have had me in fits of laughter and
tears in equal measure.
The reason I find
myself posting this message is that from what I can gather my experiences
are not unique. We all seem to have been let down by various medications,
relationship problems (what an understatement) and ever-decreasing
Recently my condition
has worsened and my resolve to combat this affliction has waned
immeasurably. I'm tired, you know. Really tired. Last month I lost my job
due to mass company redundancies and the lesions began to re-appear on my
neck and then my face.
You think that when you have suffered for so long you would become
mentally stronger, but for me it is the opposite. It's a struggle just to
go outside to the shops and summer is just around the corner.
Ironically, my GP has
diagnosed that I also have vitiligo on my hands and arms. So the one
thing that actually helps my P — sunlight — I now have to avoid. And
who says that God doesn't have a sense of humor.
None of the treatments
that have been prescribed to me — PUVA, topicals, everything — have
ever been anything but a limited success. I hope the humility that you
have shown and the courage of all your visitors can inspire me go another
round with this condition because at the moment it dominates my life.
Keep up your
tremendous work. -James
Of course you’re tired, James.
Another way of putting it is, you have worn yourself thin fighting
this thing. You have been
deliberate in your attempts to combat P, yet it behaves as though it
barely tolerates your opposition and needs very little motivation to
simply undo all that you have done.
People must live
through something like you have to understand that spirit
and will are consumables.
We hold so much of them, and they can be used up — but they can
also be replenished.
You need a break.
One of the things I
haven’t kept up with is the reception of our new batch of “biologic”
drugs for P in the UK. I know
you have your own processes of drug approvals.
I’m wondering about it because I sure hope you’ll have access
to drugs like Enbrel, Remicade, Amevive and Xanelim (undoubtedly to be
offered, sooner or later, under different names across
the pond). Their upcoming
availability for me is boosting my spirits (i.e., replenishing one of
those consumables). The
Methotrexate is beginning to lose its effectiveness and I was taken off
Cyclosporine last year because my time limit was running out and my blood
pressure was rising. Me and
20,000 others are on the Enbrel waiting list right now and, if its
availability continues to slip into 2003 I’ll be crying in my Diet Coke
and definitely looking elsewhere.
James, do your best to
recall what’s propped you up before.
Where did the energy come from the last time you flamed?
You may find an altogether new repository while you’re looking
for remnants of the old. What
does that mean? You’ll know
when it happens to you.
Write again and let us know how you’re getting on. -Ed