Diet, Medicine and TTM

(Letters From John Kender's Mailer)

From:

"Cynthia Brillhart" justgirl@mindspring.com

"Yes, it is interesting to read articles on TTM but as interesting as they may be the conclusions are still only marginally helpful.  The bottom line is that prognosis for this disorder is extremely poor and I have never heard any real evidence to the contrary.  I have had remissions. I know others who have also had them- for months and sometimes years.  The John Kender Diet has been the only thing that has helped me significantly for any extended period of time.   Prozac eliminated my pulling completely for the first three weeks I took it but then it came back as my body adjusted to the drug.  What works for one person may not work at all for another which is why the TTM Remailer serves to support and share ideas on different strategies.  I guess I just want to stress that there are many different perspectives on TTM  and the many  research studies that are out there today.               

Relatively speaking, TTM research is is its infancy.   Until it is widely recognized as a significant problem there will likely be little funding for research.  My guess is that it will take a celebrity or relative of a celebrity to act as a poster-child to get the word out on what TTM is and how seriously it impacts significant numbers of people in the US and abroad.  Most family physicians know precious little about it and currently offer little help to their patients - and these are the rare ones who even recognize the disorder at all!                     

Most of us are masters of camouflage and disguise.  This is for the most part a secret problem but one that has very dramatic effects on people's lives.   Each of us has suffered alone at some point.  There have been many misunderstandings with friends and relatives and strangers.  Add up all of the casualties- all the children that curtail their social and academic activities to avoid exposure and you get an  adult who have never shared their secret with anyone and who suffers in silence.  There have been many wasted years of our lives spent in rooms contorting our limbs and digits in order to carry out our compulsions that only leave us scarred inside and out.  Our families and friends are also impacted and so the damage goes out in expansive waves...                     

I have often thought that if my life were ever stable enough I would try to position myself in a place where I could be a voice for us.  I am not even close to being there now but I think it might be possible in the future.   It pains me to think of the opportunities I may have missed out on, the life I might have had "if only..." and all of the gifts that people with TTM might have contributed, etc.   Mind you,  it is remarkable to see what we manage to do without there being a "cure."    We are artists and doctors and teachers and parents and wonderful friends to have. Some of us still thrive.  I've met some remarkably successful "Trichsters".  I just can't forget the suicidal tendencies some of us have had and the frustration that brings us to cry in despair.  I want the next generation to have it better and I want fewer spirits to be dampened or worse extinguished by a secret shame that is beyond our control."

This is an excellent letter that shares the true heart of one woman who has truly suffered with TTM. Her words are hauntingly true and yet they give rise to a hopeful future for all of us with this daunting disorder. We have each other and we are no longer alone. Thank you, Cynthia for this lovely letter.