|
Chapter Ten
Armchair Philosophy
2008
Postscript: More on Derms and
Self-reliance ... There is NO CURE to buy — yet
A
few summers ago I became acquainted with a tomcat that, at
first, liked simply to sleep in the shade of my back patio,
but eventually learned that by being friendly he could earn
food. In no time at all we were tight pals. He's definitely
not a feral cat — humans normally don't become “pals” of
feral cats — but I do believe he lives most if not all of
his life outdoors, roaming where he wants, when he wants.
Late that first summer of our acquaintance I noticed sores
forming behind his ears. He was scratching the backs of his
ears constantly. First he scratched his fur away, then he
broke the skin, then he prevented the ensuing sores from
healing by constantly scratching away the scabs. It was
ugly and undoubtedly painful. I began to worry about
infection and, when it became obvious the cat was in a
vicious no-way-out situation with his self-destructive
scratching, I finally called a vet.
The vet concluded: “Ear mites.”
Of course! I thought, slapping palm to forehead. It
wasn't a skin problem. The poor animal was scratching
through his ears to get at the annoying insects in his head.
We subsequently and successfully tackled the problem using
a prescription that killed the mites.
All of this got me thinking about my psoriasis. (No, I
didn't experiment on myself with the ear mite medication).
You look at damaged skin on an animal and you invariably
assume a life-threatening situation. Yes, most critters with
skin (a soft tissue) separating the rest of their bodies
from their environment — as opposed to those much more
resilient organisms with shells and exoskeletons — will
periodically damage it, and all successful vertebrate
species have evolved complex methods of healing such damage.
Sores that don't heal through normal mechanisms (e.g.,
refraining from scratching, keeping the wound clean, etc.)
often indicate an underlying cause, something that attending
to the skin itself won't solve. (Is this beginning to sound
familiar? Do you have lesions that behave similarly?)
My friend the tomcat had some severe skin problems not as a
result of any innate problem with his skin but
because of his ear mites. His skin damage was incidental
to the root problem.
So, I asked myself. What could psoriasis be
incidental to? Research seems to be homing in on a
solution to that question. Psoriasis now appears to be a
genetic proclivity. It appears to have to do with an
elaborate immune system, governed by genetic code, gone just
slightly haywire.
Why should my skin “assume” it has to grow fourteen times
faster than normal on some parts of my body and just some of
the time? What goofy signals are being generated (and how)
that “fool” my natural defense mechanism into extensive
damage control where there is no damage?
Since answers to these questions are, for the moment at
least, still elusive, for my own peace of mind I resorted to
a little armchair philosophy. Simply for the sake of
argument, I'll share that philosophy.
I begin by accepting as correct what current research suggests: Psoriasis happens because our genetic code
enables our immune system to behave inappropriately.
That is to say we are hardwired so that our skin
occasionally thinks it has to commence extraordinary
reproduction in certain places when, in fact, it doesn't and
shouldn't.
Were we anything other than human on this planet, such a
condition might be fatal. No, I'm serious. Think about it.
None of my medically prescribed regimens cures
psoriasis; at most they just subdue it, and they don't do
that very well much of the time. It is my combination
of intellect and prescribed therapies (which are a product
of our society) that
prevents me from spiraling down into a potentially fatal
cycle like my tomcat friend.
This is not so far-fetched. I can't begin to count the
mornings I've noted blood stains on my sheets. Without
“modern medicine” and our socially learned habits of
personal hygiene, how long could I suffer these lesions
without becoming infected by something serious?
In short, my psoriasis is definitely not contributing to my
ability to survive, nor is it a meaningless aberration.
Without the “security” of my intellect and my
society, my
psoriasis could be life threatening. If tom didn't have his
ear mites cleared out, the wounds to his ears from
scratching might have become devastatingly infected.
All right, you might ask. If we're so “superior” at
surviving as a species, why are we carrying around this
potentially fatal genetic code? The answer is simple albeit
cryptic: Because we can.
The psoriasis that might kill us if we lived like wild
animals is, because of our humanity, embarrassing but
bearable.
Before I “prove” this, you must understand the sense in
which I use the expression, “our humanity.” In this context,
I think of “our humanity” as that aspect of our environment
which we fabricate and control.
Species survive on this planet when they can assimilate
their genetically-driven (or “hard wired”) behaviors into
their environment. Species other than human exhibit “social
behaviors,” but, when these species succeed, their social
behaviors are determined by a happy compatibility between
their genetics and their environment. Species become
endangered when their hard wiring is no longer compatible
with their environment, hence their behaviors no longer
preserve and protect them. If those behaviors could
override the dictates of environment (like our humanity
does) we wouldn't have so many endangered species. (We’d
also have a lot more competition for life-sustaining
resources.)
Our humanity is our edge. If environment ever gets the
better of us, it's not likely to be nature's environment,
but the one we've created just for ourselves. [Isn't our
current global warming an example of this? -Dewke,
5/29/2008]
To take the next step in this argument we must make another
leap of faith. That is, we must accept the basic tenets of
evolutionary theory, most particularly, “survival of the
fittest.” Simply put, that tenet means that the
better equipped we are to survive in our environment at
birth, the more likely we are to survive and propagate.
When we survive and propagate we pass along that which
equipped us to do so as well as all our other genetic attributes. When we're born aberrant (in
Darwinian theory, at least) our aberration has a slim chance
of being helpful — most likely our aberration is either
hurtful or irrelevant. If it's lucky enough to be helpful,
fine, we'll survive and propagate it. If it's hurtful, we're
likely not to survive and therefore not propagate (at least
not as much). If it's irrelevant we'll
probably survive and propagate it. [Ailments
typically attacking the aged, such as various forms of
dementia and many other heritable diseases, are probably
genetic proclivities that persist because they are not
triggered until AFTER we have propagated. -Dewke, 5/29/2008]
All of this makes perfect sense (to me at least) when you
consider species existing in social groups that react to,
but cannot alter their environment. Our humanity changes
this prescribed order, which Darwin called “natural
selection.”
Our humanity tends to protect aberrations regardless of
whether they're helpful, hurtful or irrelevant. Think about
it. As humans, we have created systems, institutions,
patterns of behavior — in short, social systems or
societies — that have had profound — and, we're
realizing just recently, often profoundly negative —
effects on our environment. Whether for better or for worse
they have served to keep us, essentially, as we are.
But
HAVE they?
I
tend to believe the human species hasn't always harbored
psoriatics. I further venture psoriasis didn't “happen”
within our species until we were already protected by those
systems, institutions and patterns of behavior I'm lumping
under the expression “our humanity.” Why do I believe these
things? Without our humanity, psoriasis could very well have
been fatal, or at least a “dead end” disease. It would have
been fatal if we let the lesions crack, bleed, become
infected. It would have been a dead end if no one cared to
mate with us.
Our humanity overrides these considerations. Our humanity
allows our psoriasis to be more-or-less irrelevant. So we
live normal life spans, we keep our lesions clean and supple
(at least some of the time). We hide our lesions when we
can, and, most importantly, we mate and propagate more
psoriatics.
Now we get down to the real armchair theorizing. I
think that our humanity, which for the time being allows us
almost as much effect upon our environment as it has upon
us, largely ignores the fact that differentiation (or
mutation, or diversification) is going to happen
anyway.
The ugly truth of the matter is that the more our humanity
keeps environmentally controlled natural selection at bay
(by making it irrelevant) the more aberrant our population
is likely to become.
Think about it. By thumbing our nose at nature, essentially
saying our humanity will compensate for our physical
aberrations, we're giving nature free reign to propagate all
sorts of genetic abnormalities. It's a denial of the natural
selection process.
A
psoriatic living an aboriginal life in the outback of
Australia might have a tough time “coming-of-age,” finding a
mate, propagating his problem ... but not in Manhattan, or
Denver, Chicago, Des Moines, Paris, Moscow or Beijing ... not
anywhere our society lets us treat the symptoms, write books
like this one, and make the condition a thing warranting
sympathy but not threatening survival.
Why do we have psoriasis? Because we can. Our
humanity has permitted it.
●●●
Now we need to take another leap. When I joined the U.S.
Coast Guard in 1969 I'd never seen an ocean except in
movies. Flying into San Francisco Bay for the first time, at
night, was a breathtaking experience for me. It was so
beautiful! I took a cab from San Francisco
International Airport to Alameda, across the bay. While we
were on the Oakland Bay Bridge I became mesmerized by the
lighted hills of Oakland and sighed.
“That's something to behold,” I said aloud to the cab
driver.
“Yeah,” he said. “Like a cancer spreading over an otherwise
perfectly healthy mountain.”
I
was, at the time, stunned by the sordid implications of his
reasoning. Since then I've come to realize the brilliance of
his vision (though not necessarily the correctness of it).
The Bay Area, or any metropolitan area for that matter, is a
perfect example of human society circumscribing
environment. Where once condors flew there is now a
nighttime brilliance of lights that perhaps only our species
finds comforting.
Okay, so where is all this going? My armchair philosophy
suggests that, because of our humanity, a few million of us are allowed to propagate this irritating skin
condition called psoriasis. Essentially the same
humanity that put the lights on the hills of Oakland is the
one that allowed my genetic anomaly to be passed down
through generations.
Since there are so many of us genetically-inclined
psoriatics (about seven million of us in the U.S. alone), there
must have been a common branch somewhere way back when.
Wherever the gene mutation happened that said “Make your
skin think it's wounded when it isn't” had to start
somewhere. And that's our common ancestor, folks. Yours and
mine.
Genes, even bad ones, have this geometric process of
propagating, and our culture lets it happen. Therefore there
is only one direction to choose. Perhaps we can learn to
alter the consequences of our proclivity towards psoriasis,
or block its triggers, develop proactive rather than
reactive regimens for treating it. To accomplish this we
must surely march in the direction of more humanity.
We must tame the a variable.
●●●
I
wrote “Armchair Philosophy” at 3:00 in the morning. By 6:30,
when my dearly beloved joined me in the land of the awake,
nobody could have said anything to me that would not have
engendered a “philosophical” response. I was into
waxing speciously (as you can tell). The first thing my significant other did in her groggy
morning state was knock down the paper
towel dispenser that hangs beneath one of our kitchen
cabinets. “I hate this thing,” she mumbled.
“It's an object,” I said. “You, on the other hand, are an
intelligent being. You are capable of mastering your
environment. That paper towel dispenser ought not be
controlling you; you should be controlling it.”
“Fine,” she said, yawning. “It's outta here.”
Wouldn't it be nice if we could be so cavalier about bad
genes?
About derms and self-reliance
Electing to become a doctor means you dedicate your life to
the wellness of others. Who can criticize the nobility of
such a dedication? Now imagine you're specializing in
dermatology and your leading professor says to you,
“There's a percentage of your patients whom you won't be
able to make well, but you can't count on them dying off —
that is, going away — either. They'll linger in your
office for years seeking relief and, maybe, you can provide
it for a few weeks or months at a time, but the relief you
engender is never permanent, never a cure; and the more
radical the treatment regimen you prescribe, the more likely
other ugly things are going to happen to them; things that
will ultimately make you send them to other doctors for
other solutions.”
Depending on what kind of person you are to begin with, you,
the derm student, are going to react to this news in one of
two ways. One, you may think, “How tragic,” and you may get
a little weepy-eyed about the cures you're not going to
get to make happen. But two, you might think, “Ah! Job
security!”
Believe me, I've been to derms whose bedside manner has
appeared to reflect each of these attitudes towards
psoriatics. I've been to some derms whose attitude seemed to
be, There's nothing I can do, so don't waste my time.
I've been to some whose optimism about their ability to
treat me seemed purely motivated by how much income I might
represent over the next few decades. And I've been to others
who wanted earnestly to help me. It appears to be in the
nature of the earnest ones to push for ever more radical
treatments. This is to be expected. Though they know they
cannot, yet, effect a cure, they know there are ways to
palliate the symptoms — a spectrum of increasingly dangerous
ways to do so. They ask themselves, How bad does my
patient feel about her condition? How drastic need be the
counter measures?
There have been moments over the course of my evolving
psoriasis that I have cursed my derms. And there have been
moments when I blessed them profusely. Thinking back over my
flaking history, I come up with only one summation: It's
up to me.
Derms know — all of them know — that they are, for the time
being at least, treating the lesions, not beating the disease. What
they can do for us and to us is palliative, at best.
Unfortunately, many of the countermeasures they have at
their disposal can be as wicked as the disease itself.
Yeah, if you itch yourself into a bleeding frenzy your derm
is apt to prescribe something drastic, like a systemic
remedy that can kill your liver (subsequently your
entirety), blind you, make you give birth to aberrant
babies....
Sometime after my psoriasis was diagnosed, the second or
third derm I went to wanted to prescribe a retinoid (a
systemic medicine that works to curb lesion growth through
effects that evidently are not completely understood).
“Before we put you on this drug,” this derm said, “We need
to get a blood work-up on you and also have your eyes
examined.”
That was my first clue that retinoids were a serious
countermeasure. I have a skin problem. Nonetheless, I
went to the lab for the blood test and went to the eye
doctor for an exam.
The blood test cost me fifty dollars and revealed some liver
function abnormalities. The eye exam concluded that I was
almost twice as blind as my then-current lens prescription
accounted for (which subsequently resulted in my first pair
of bifocals and a second pair of glasses for work at the
computer — cha-ching!). And, because of the lab
work and a report by the eye doctor, my derm would not prescribe the psoriasis-fighting
regimen he had in mind.
I'm grateful, in retrospect, that all of this happened. A
lesser derm might have just launched me on the
liver spoiling, blinding regimen, in which case I'd either
be dead or sightless today. Who knows?
The point of all this is that if you are psoriatic, you're
like a luckless roll of the dice. You got it, kitten; learn
to live with it. Find a derm who will go with your flow.
By that I mean, find a derm who is, at the onset of your
relationship, honest about the limitations of what he or she
can bring to the table.
Then, you must take charge. The derm I'm seeing these days
said to me early on — with refreshing forthrightness — that
he could prescribe ever more dangerous treatments, but
opting for them would be my call. You see, most psoriasis is
not life-threatening. The derms aren't empowered by
oath to coerce us psoriatics into any particular regimen,
because we can elect to live with the lesions. A flaming
period will rarely land us in ER under “code red”
conditions, and derms know this. This is a strikingly
different situation than that of the doctor treating a
patient with dangerously high blood pressure. That doctor
knows her patient is risking stroke or heart attack — that
is, life-threatening consequences — and can aggressively
prescribe whatever remedy is in order. Our affliction, on
the other hand, tends to dirty carpets and make us generally
repulsive in a social sense; period.
Psoriasis, like ugliness, is rarely fatal. Psoriasis, when
compared to the rest of the human symphony of disorders and
diseases, too often sums up to be little more than a
tremendous annoyance — and this means a good derm's hands
are tied. And when your doctor's hands are tied, you and
only you can be in charge.
So, how are you supposed to “take charge?” I suppose that
depends on the severity of your condition and the amount of
“discomfort,” both physical and psychological, it causes. In
my case the most useful thing has been maintaining a record
of what I've tried, what's worked, when it worked (time of
year), and when it stopped working.
Over the years now that I've fought psoriasis, by
paying attention to it and keeping records I've learned that
I can count on seasonal flare-ups.
Drastic weather changes cause me to flame. And it doesn't
seem to matter whether the change is from hot to cold or
cold to hot. Also, any damage done to my skin will either
create a new lesion or cause nearby lesions to flame. For
example, I don't dare pack a snowball with my bare hands
lest I'm prepared for an eruption of pustular psoriasis
within a week or two.
Though it's hard to track, I believe there is some truth to
the “ninety days” theory about psoriasis and unusual stress.
The theory predicts some degree of flaming will occur three
months after some stressful trauma. It's a fact that about
ninety days after my second wife left me — and literally
cleaned out our house while I was out of town — my psoriasis
flared mightily. (This beside the fact that some weeks after
her departure she said to me, “Now that I'm gone, I'm sure
your psoriasis will clear.”)
Lots of psoriatics report that improved “general health”
helps their psoriasis. This is a kind of naturalistic
approach that I've been unable to correlate with the waning
and waxing of my own psoriasis. There've been periods when I
felt “in tip-top shape” and still flamed mightily; periods
when I've been ill and either my psoriasis waxed or waned —
in other words, no discernable correlation.
If it's true that “stress” is a common trigger for
psoriasis, then it makes intuitive sense that when you're
feeling good your psoriasis might acquiesce, because when
you feel good you're less stressed. But the lack of
correlation in my own case between “good health” and my
psoriasis drives me to focus on other patterns, other
triggers (like weather, which I can almost prove is a factor
in my case).
Derms in general can't be of much help when it comes to
“understanding” the causes or the patterns of your
psoriasis. Sure, their literature suggests a litany of
standard countermeasures: for example, “You drink alcohol?
Stop drinking alcohol.” (And then they say under their
breaths, And we'll see what happens.) Or, “You eat a
lot of red meat? Stop eating so much red meat.” (Followed by
the same tentative after statement.)
I'm not putting the derms down. Maybe alcohol is one
of your triggers. Maybe red meat is one of your
triggers. The important thing is for you to determine
this yourself. To do this you experiment, give the
experiments some time, and record the outcome. After awhile,
if you're like me, the data reveals patterns you can use to
predict (and perhaps avoid) some of those flame times.
Over the past six years I've been treated by a few derms. I
reflect back upon our relationships with varying degrees of
fondness, from contempt (no fondness whatsoever) to
admiration (much fondness). My current derm is a keeper.
He'll let me call for prescription renewals for several
months before he asks me how I'm using the topicals and what
the results have been. I know why he asks, because most
topicals can be “overused” and start to create more problems
than they solve. I've sent my derm faxes in which I've
explained how, why and when I apply my topicals and he
invariably renews the prescriptions and lets me carry
on.
As fond as I am of my current derm, I want to say this:
No derm has taught me all that I need to know about living
life as a psoriatic. I feel that I'm in control for two
reasons: The first is that I elected to be proactive
about my psoriasis. The second is the on-going education I
receive from the National Psoriasis Foundation, based in
Portland, Oregon. The Foundation’s web site, periodicals,
brochures and booklets about particular aspects of psoriasis
and treatment regimens constitutes a library you must
possess if you're going to be proactive about your life with
psoriasis. If you’re not already a member, visit
http://www.psoriasis.org and do consider joining.
My psoriasis didn't manifest itself with any severity until
I was nearly forty, so there are millions of my brethren
who've suffered considerably more — including many who have
never known life without psoriasis. For obvious
reasons, psoriasis is a disease suffered primarily alone or
within the confines of loved ones and close friends. No one
has ever casually asked me, “So how's your psoriasis fairing
today, Ed?” (I rather hope no one ever will.)
I've had many strangers look at me weirdly — as has every
other flaming psoriatic who cannot simply hide — and I live,
as do my brethren, every day knowing that something is wrong
with me.
In the words of guru Stephen Covey, we all strive to live,
to love, to learn and to leave a legacy. That's no less true
for us, my cousins. I know it.
●●●●●
Ed’s Postscript (5/22/2008-7/4/2008 ): I've
mentioned before that the search for genes that might
"cause" psoriasis has become complicated because there
appear to be several involved genes. I don't understand the
biochemistry at work here, but it's simple logic to deduce
significant increases in potentials and
complexity as the number of variables (genes)
increases. Today I must state that the "a
variable," as I called it in 1995 in this text, is still
being defined. As additional genes that play a role in
psoriasis are discovered, the definition grows and a true
"cure" grows more distant.
But if we can artificially "correct" the immune system
behavior that makes psoriasis happen, isn't that a "cure" of
sorts? Consider diabetes: Millions of people with type 1
diabetes live full lives because they inject insulin on a
regular basis. A type 1 diabetic has a pancreas that does
not manufacture enough insulin (if any) to serve its
dual purpose of "unlocking" cells to admit glucose (their
primary fuel source) and storing extra glucose as fat.
Receiving insulin by injection does not eliminate the
problem of a non-functioning pancreas, it simply bypasses
the requirement to have one. If the immune system behavior
that generates psoriasis symptoms (various inflammations and
formation of skin lesions) can be stopped through the use of
man-made products, isn't that much the same as insulin for
diabetics? It is, I think. And I wish we had a drug that
worked as well on psoriasis as man-made insulin works on
diabetes.
Another facet of our comparison between diabetes and
psoriasis is proximity to a cure. Looking at this facet,
there is very little proximity. We know what causes diabetes
and we are close to a cure. We know what's required is a
replacement of a certain kind of cell
— the insulin
manufacturing cells —
in the pancreas or its ducts. There has been some success
with transplanting cells. There have been some encouraging
prospects in the use of stem cells "programmed" to grow into
the needed cell type. The former approach is replacing
the missing cells, the latter is, effectively, regenerating
them. But we don't — at least yet
— associate psoriasis
with damaged or missing cells. For the time being we
associate psoriasis with an immune response "chain" that
involves the independent but associated behaviors of several
types of lymphocyte. Our biologic medications — the latest
entries into the anti-psoriasis armory — prevent specific
behaviors of these cells from taking place, either by
blocking "signal" molecules they generate or killing the
cells that generate them. One of the consequences of this
effective approach to thwarting psoriasis symptoms is the
possibility of compromising the immune system's ability to
fight infection. Virtually all the biologics currently used
for psoriasis come with warnings to this effect. So, looking
through this facet it is plain to see the biologics are not
as "healthy" for psoriatics as insulin can be to type 1
diabetics. (This is not to suggest insulin is harmless!
Insulin shock — a consequence of having too much insulin and
not enough glucose at the same time — is a serious threat
for type 1 diabetics.)
More On Derms and
Self-reliance
I need to point out
that for the past three years my psoriasis has been treated
exclusively under the care of my rheumatologist. During that
time I've not had a consultation with my dermatologist. It
could be that I won't EVER have another consultation with a
dermatologist. This isn't the result of any sort of falling
out between us. Between my derm Dr. and his fine PA's I had
been totally satisfied with the attention and treatments
— that is, until my
rheumy came up with the biologic that worked better than
anything I have ever tried. Years earlier, my rheumy had
been referred to me by my derm; he had not wanted to take
full responsibility for the diagnosis and treatment of my
psoriatic arthritis. I believe it was his policy with all
his psoriasis patients to refer them to a rheumy when PA
entered the equation.
At the time I first
went to the rheumy, my skin psoriasis was 99.9% in
remission, thanks to Raptiva, but my PA was bad, almost
debilitating. I went thinking my rheumy would give me
cortisone shots into the knees, or prescribe a powerful
painkiller; instead, she talked about different biologics,
ones that would placate the P-arthritis and, most likely,
keep the skin clear, too. She talked me into trying Humira
instead of Raptiva, and together she and my derm worked out
a strategy for me to "step down" my doses of Raptiva while,
at the same time, starting small and "stepping up" to a full
dose of Humira. It was a strategy that worked well for me.
The skin never rebounded severely (though there was some
increase in skin involvement for awhile), and my PA faded
away. That's when my hiatus from dermatology began.
I have been treated by both a skin doctor and a joint
doctor for my psoriasis, which we now believe is an immune
system disease. As I mentioned in the
postscript to chapter
6, physicians of immunology are hard to find — at least
the sort I think we need are hard to find. Something is
bound to change about this; too many diseases are being
identified as immunological, and they affect widely diverse
systems with a broad palette of symptoms. I would like to
think that one day we will have a specialist who can attend
to all of these with great efficiency. Some prognosticators
suggest there will come a day when simple tests will ID
disease types and sub-types and point to specific treatments
most likely to work based on the patient's genes. It's
unlikely I will live to see that day, but I am happy my
grandchildren probably will. I am seeing enough miraculous
remission of psoriasis today — based on this first
generation of biologics — to be joyfully hopeful about the
future. The propensity to flake appears well imbedded in our
genes. Stubbornly imbedded in our history. So stuck inside
us it might take several millennia before it is bred out —
if ever. But drugs that compel the immune system to behave
in certain ways will get better, more sophisticated, less
dangerous so that one day the most recalcitrant flaker among
us will not have to shed one flake from the machinations of
his inbred disease.
Meanwhile....
There is NO CURE to
buy — yet
Regrettably, psoriasis is one of those diseases that
snake oil really can help — if snake oil of any sort comes
as an emollient with exfoliative properties. All kidding
aside, many flakers who find something that works well for
them immediately forget everything they've tried that did
NOT work and believe they have discovered a cure FOR
EVERYBODY. A few will come right out and say, "MY STUFF
won't work for everybody, but you have nothing to lose from
trying, and roughly 8 out of 10 of you will have a happy
outcome." The most earnest of these folks will conduct some
trials (i.e., have half a dozen of their acquaintances with
psoriasis try their stuff, get fast positive feedback,
compose testimonials) and derive a marketing campaign
by spinning this all together. Most of the time, in my
experience, there is usually an ingredient behind all of
this, an old ingredient known for a long, long time to work
somewhat on psoriasis, but now it is concocted into some new
formulation, newly bottled, newly named, etc. These weren't
then and aren't now CURES for psoriasis; at best they are
palliatives that will work for SOME PEOPLE for SOME TIME;
never for everybody; never forever. Well, I've heard about
one possible exception: Many years ago I had a short but
intense burst of correspondence with a young woman whose
grandmother had been "cured" by using apple vinegar. I wrote
to her that I knew apple vinegar helped some people for some
time, but it wasn't very reliable or long lasting. My
correspondent disagreed, citing the fact that her
grandmother had been applying the apple vinegar the very
same way for years and years and NOT had another flare.
After going back and forth with this writer for a few days I
finally asked her to describe the severity of her
grandmother's psoriasis. I asked, was it mild, moderate or
severe? I told her about percentages of skin coverage and
how one could consider an area the size of the palm of your
hand as 1% of your overall skin. She eventually responded
that her grandmother would be considered mild. I pressed for
more specifics. Finally, she wrote that her grandmother had
one Quarter-sized lesion on an elbow. Period. The apple
vinegar cleared that up and, with regular periodic
re-applications, it never came back. That's the only
exception I've ever heard about. But, as I said, this
correspondence was many years ago. If the grandmother is
still alive and has, in more recent years, experienced a
relapse (a return of the Quarter-sized lesion on her elbow)
I would — admittedly selfishly — be a happy man.
What we really need to be thinking about is not "curing"
psoriasis in the sense we cure polio and tuberculosis. But
disarming psoriasis, which we probably will learn to do in
the near future. By "disarming," I mean inhibiting the
inflammation, scale formation and joint degradation that
various forms of psoriasis are all about. In short, what
today's biologics are doing, but doing it better, more
reliably and in a much more equitable fashion. By "equitable
fashion" I mean at costs that are affordable. We should work
for a future in which every flaker has access to the
Inhibitor (whatever that might ultimately be). There may
come a day when there really IS a CURE. It will probably be
some sort of gene therapy, in utero or after birth. But an
effective Inhibitor is likely to arise long before that cure
is discovered — meaning we will not have to wait to be
psoriasis lesion free.
And so to you, my
brothers and sisters and cousins in suffering. I say live as
sweetly as you can, itch as gently as you can, be kind to
everyone (except those who promise a cure). -Ed
●
Contents of
Flake: Confessions... |