Trich and JK diet statistics

Some time ago, people asked some questions about the numbers that John Kender
have reported about people using nutritional and skin care approaches to TTM.
Here's some responses to their questions .
First, some statistics (some of them reported already):

Prevalence of TTM: about 0.5% to 3.5%, based on various surveys.
People with TTM: about 30 to 200 million, worldwide, about 1.5 to 9 million
in the US.
People seeking help from TLC: about 50 thousand.
TLC active membership: about 2 thousand.
People ever joining TTM mailer: about 3 thousand (3002 exactly).
People ever joining BrendaC's web pages: about 2 thousand (1970 exactly).
TTM active membership: about .5 thousand (473 exactly today).
People asking for nutritional information: about .2 thousand/year this year
(an estimate; I don't keep the requests); this would be about .7 thousand
total over the past five or six years.
People who wrote to say they have experienced "some" relief from TTM for 
"at least one week": about .3 thousand (269 exactly today).
People writing to say "the diet works" after only one to three days:
probably about .2 thousand, but I don't keep those letters or count them.
People writing to say that they tried nutritional means without success:
about .02 thousand (an estimate; I have saved the email with other
correspondence but have not gathered it together in one file.)
Longest stretch of continued relief: about 5 years. 
Number of lapses: unknown, although there are a number of people, about ten,
who have written saying that they were "going back on". 

Now, more qualitative information:

I readily agree that my figures are not scientific data, and that no one has
yet done any controlled experiments involving diet and TTM. (In constrast,
many such studies have been done involving diet and psoriasis; MedLine lists
70 articles on fish oil adn psoriasis alone. Psoriasis can kill people and it
is a large market for prescription drugs. Nevertheless, results show only
some people get benefit from dietary approaches, and there is some debate as
to whether psoriasis is just one disease.)

The benefits that people do report are that generally that the urges are
diminished, and in some cases, disappear. There is no objective quantitive
scale yet devised for measuring urges (even the medical doctors studying TTM
use subjective reports), so I have no way of even asking people in a followup
letter how much the urges have gone away. However, nearly everyone who has
written who comments on the urges say they feel more in control; again, this
is clearly an approximate estimate. 

Some people I have heard from only months after they started nutritional
control and they still report benefit enough to continue them. The last time
I did a detailed study, when I crossed the mark of 100 reports, about 20%
first spoke up after a month or more. (Usually, they say they "wanted to be
sure".)

I have not done detailed follow-up studies by email. Nearly always I get the
impression most TTMers would prefer to be the ones controlling the
conversations; there's a lot of shame going on here. I do recall about ten
cases over the past four years involving parents of affected children, in
which I have sent an email note to see what had happened. The answers in
those cases have been mixed: one absolutely clear failure of dietary
approaches, about three or so with issues about compliance, and the majority
reporting some benefit, sometimes in glowing terms.

In terms of what I count as being support for positive benefits of a
nutritional approach, generally, I only keep letters that specifically refer
to the avoidance of those "natural" "bad" foods that appear in the document
that I send out in response to requests for information. (Most people have
not had much continued success with taking supplements, for example,
potassium, although recently fish oil has seemed to be getting some success.)
So, anyone reporting that avoiding sugar is helpful is fine with me, even if
they are doing it to lose weight or "calm down", and just happen to notice the
TTM benefits indirectly. (To my knowledge even today no TTM therapist
recommends sugar avoidance.) Since just "eating healthy" doesn't seem to
work--vegetarians have terrible TTM problems--I try to be very specific in
what I look for in the emails, and don't just count everything.

The big culprits seem to be: sugar, caffeine, and lecithin- containing foods
like egg yolk, chocolate, peanuts, soy. Benefits do seem to be cumulative,
and in this way, the nutritional measures resemble what is recommended for
dealing with allergies: any cheating is bad and proportionate to the amounts
cheated with. To get full benefit and full cessation of pulling, most people
have reported that they have to avoid all of their triggers (usually the full
list above), but that avoiding most of them most of the time still is
worthwhile with partial results. It is not a magic bullet: a few days on a
good diet is not a cure. People disappointed with meds or behavior therapy
not being a perfect one-time treatment will be disappointed here, too. 

One final observation: Over the past seven years, I know that I have touched
in some way about 4 thousand TTMers. For about 7% of these people or so, my
ideas on nutrition have had enough impact that they have written to thank me
about them. This is not yet science, but I am confident some day it will be.
Even if this 7% are the only TTMers whose pulling is diet-related, this has
been helpful to them and gratifying to me.

John