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Erythrodermic P Can Be Fatal
Hi Ed and all.
Just finished checking out the new 10th anniversary edition, and was delighted. I think in particular the history and retrospect were the best and most fascinating aspects — as a "newcomer" of only three or four years (I think), getting a look at your early days (and those of the National Psoriasis Foundation) were enlightening.
I was also particularly interested in the interview with Ed Reiss, because he got into a number of interesting areas. I particularly liked his viewpoint on your respective (and also joint) histories, plus his interesting comments on why it's so difficult to properly assess a nutritional attack on P.
And he raised a very good question — what do we mean by a "cure," when we're trying to guess the likelihood of one being discovered/invented/whatever? I think most of us agree that we mean a one-time (or short-term) treatment that never needs repeating.
My own two cents on that issue, as a non-professional — and my apologies if I've already said this in the past, my memory ain't what she(?) used to be. Given what we now know about P, my personal guess is that the only area where there's any possibility of discovering a “cure” would be genetic "engineering" on a newborn, or more likely a fetus. And I think we're not quite capable of that yet, technologically, plus (and probably more importantly) we're DEFINITELY not even close to ready for that culturally. Look at all the battles over stem-cell work, for a very close parallel.
That raises an interesting question, too. Even if it were acceptable and possible, would there be any way of determining the need for such treatment on a fetus, other than by inference from family history?
Oh, and some comments on the rare possibility of fatality from P. And this includes some comments about erythro which I don't remember seeing here or anywhere else before, from one of my former derms. Heat-retention with P is fairly common, as a result of plaque plus the increased blood flow (that's the most common reason we sufferers often have problems with swollen feet and/or ankles). In an erythro flare-up, one of the biggest problems is that the heat retention has increased to the point of a full-fledged body fever, so top priority is to break that before it can become life-threatening. That's why here, at least, standard response of any decent derm to a severe erythro flare-up is hospital admission on an emergency basis.
Best, -Mike B.
Ed’s Response: Always a delight to hear from you, Mike. I think the life-threatening nature of erythrodermic psoriasis is understated because it IS so RARE. I know you’ve been hospitalized for it — and you were the correspondent most on my mind when I mentioned my familiarity with the condition. I thank the fates that you were too stubborn to succumb to it — and offer sacrifices to ensure you remain so.
Your suggestion that the “cure” for psoriasis will probably involve some kind of gene therapy, perhaps in utero, is certainly shared by a lot of us. The more I hear, the more confused I become, personally. It’s no surprise that, as more genes are identified as being “probably involved” in the “expressions of psoriasis,” the quieter become the biotechnologists who want to build gene therapies. (It’s one thing to find a single misbehaving gene and “correct it” or “circumvent it.” It’s quite another to (a) understand how many genes interact to create a disease and (b) effectively modify that interaction. We may be decades away from breakthroughs with the kind of gene puzzle psoriasis has become.) Meanwhile, I hope we don’t stop looking for a permanent solution in other quarters.
I’m not convinced leaky gut syndrome (LGS) is the culprit enabling P, because I can’t get a description of the “toxins” that are supposedly being discharged through our skin and causing the immune system hyperactivity. I’m also disgruntled about the fact that only a small percentage of people who probably have leaky guts actually manifest psoriasis. I would like to see it proved that LGS causes P, then I’d like to see exactly what it is that makes flakers react the way they do to their LGS, and, finally, I’d like someone to create a pill that fixes it. Is this perceived opportunity any less likely than a gene therapy solution?
Why do coal tar derivatives help some people’s P? Why does sunlight help some people’s P? All of these are mystery TREATMENTS — palliatives. What might be determined towards a CURE if we learned WHY and HOW these palliatives worked?My optimism knows no bounds! Go ahead, call me crazy! -Ed