DLQI Could Shed Light On Depression Among Flakers
from Mike B.

Hi Ed and all:  I'd lost track of the date (early retirement does tend to do that to me), so only thought to check for a new update this morning.  And lo and behold, there it was.

I haven't even looked at your new mail yet, so there may well be things there to trigger additional responses from me later on.  This is mostly about your], particularly your comments at the end about severity-rating.

The new DLQI (Dermatology Life Quality Index) you discussed in your Briefing sounds potentially very useful, although obviously it'll be next to impossible to assign any kind of numerical comparative "ratings."  It did trigger memories of a conversation I had a few years ago with my former derm, the one who was heavily into research.

I'd kidded him about my P: “At least it's not fatal.”  He advised that while that's normally true, there can be a one-in-a-million case where heat-retention (typical, especially with heavy scaling, which is apparently why we get things like ankle-swelling etc.) can get so out of control and excessive that there's in effect a fatal fever.  Fascinating, if it's true.

I then asked him about secondary fatalities, specifically whether there were any stats on increased suicide rates among P sufferers, particularly adolescents who can be very image-conscious.  I'd never seen or heard this elsewhere, but to me it made sense that the stats might be higher, particularly if the condition aggravated existing emotional problems.

And he agreed that yes, there definitely were indications that the suicide rate was higher for flakers.  No figures, and not even a rough indication of how much more common, but it was interesting to hear my guess confirmed.  That's probably one advantage of places like here and PsorChat that you guys never even thought of: emotional group support in addition to exchanging medical and quasi-medical experiences.

Not a cheerful topic, I'll admit, and I apologize — but it's an interesting area that I've never heard mentioned before here or elsewhere.

Best to all, -Mike B.

*****

Ed’s Response:  I know, Mike, that starting this web site in 1996 was, in part, an antidote to my own P-related depression.  It was torturous to be all alone with this disease.  Hearing doctors refer to their other cases did not abate that feeling of isolation. 

There has been quite a bit written about the depression and stigma associated with having psoriasis.  Searching on “depression” here will point to about 43 documents ... the work of Vicki Dowling has focused on the benefits of “group therapy” ... NPF’s booklet, Psoriasis: How it Makes You Feel, is an almost frighteningly concise review of how P makes us miserable beneath our skin.  (Members can download this booklet from the NPF web site: http://www.psoriasis.org.  Look under “Publications” then “Booklets.”)

I think the important value of the DLQI — if it becomes widely used — will be in distinguishing the effective severity of the disease from the amount of involvement actually visible on our skin.

The kind of psoriasis you refer to that is life-threatening is erythrodermic P.  It characteristically involves all the skin.  Fortunately, it’s rare.  It would be very difficult for me to imagine anyone who has erythrodermic P not also having a problem with depression.  There are other cases that are probably much more common but are hard to quantify statistically.  What about the individual who only has psoriasis of the fingernails but happens to be a concert pianist (or any of a hundred other occupations that involve displaying one’s hands)?  Such an individual might be indexed quite low on the PASI (Psoriasis Area and Severity Index) but quite high on the DLQI.

I hope that sites like FlakeHQ and the PsorChat forum — and all the other Internet-enabled communications channels now available to bring flakers together — do, indeed, work to combat depression among us.  Though it takes just about as many muscles, laughing is a lot more fun than crying.  -Ed

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