May-June '04 | briefing | mail | don't say this | flakers' jargon | flaker creativity | articles | other places | archives | send mail | ed dewke | legal stuff | order | search | PsorChat | PsorChat Review | 2004 Ed Dewke

Following in Dad’s Footsteps?
from Franciene L.

Hi.  My dad had P since age 7.  He died with it at 58.  But, to encourage you, he did find considerable help in the Goeckermann treatment and PUVA at 47, and spent about 2 years TOTALLY clear.  It was amazing.  I think the only reason he didn't stay in complete remission was he got tired of the regimen.  Still when he died he was down from 80% to about 20%.  For him, that was a miracle. 

I was diagnosed at 10.  Guttate — not bad.  Less than 1%.  Went away on it's own.  Never got worse.  Had a flare up again in early twenties — Guttate again — did tar and sunlight — Dad was in PUVA at the time.  Got advice from the nurses at the hospital. 

I'm 46 now and having my third flare-up of a lifetime.  I KNOW.  I'm very lucky.  I have perspective on this disease.  Guttate again.  Except this time  my face is covered.  Very uncomfortable.  See the Derm on Monday — that should be interesting.  Lots has happened with P since my dad died 15 years ago.  Lots more options. 

Anyway - wanted to say thanks.  I've been a bit low about it, even though I know I'm one of the lucky ones.  And FlakeHQ gave me support and allowed me to laugh.  Which is no small thing.  Thanks,  -Franciene L.


Ed’s Response:  I’m glad you found us and found some laughs here, Franciene.  The fact that your case may not sound as serious as some of those described on this site does not diminish our appreciation of your despondency over the flare. 

I know — having just had a rebound myself — that it can be much more difficult psychologically to deal with P when it returns after a long absence.  I think it’s a sensitizing, desensitizing thing.  When we have active P and must deal with it day in and day out we can, if we’re fortunate, become somewhat desensitized to it — perhaps we should call it an emotional callus.  Then, if we’re fortunate enough to experience a long period of lesion-free skin, we lose that desensitization. 

Someone once told me that having P is like being in prison (I’m not sure whether or not this individual was talking from experience).  He said, when you’re incarcerated for a long time you get used to it, or you make yourself get used to it, and you just get on with it.  Then you get out and what all you’ve missed while you were “inside” leaves you breathless with joy.  The prospect of going back, at that point, is agonizing — unthinkable.

But you know the good news: all those new treatments that may hold promise for you.  By now you’ve had your derm appointment and have probably picked a therapy.  I hope it’s working for you.  Let us know.  -Ed

This Month's Mail | Archives