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resident Obama’s call for the scientific community to embrace a precision medicine revolution gave me hope for some forward motion on two disorders I’ve quietly struggled with since my adolescence: trichotillomania and dermatillomania. Taking a precision medicine approach to these two conditions, which run under the radar of the medical establishment, could answer some longstanding clinical questions and potentially identify the first-ever effective treatments for them.

Trichotillomania, also known as hair-pulling disorder, and its cousin, dermatillomania, or skin-pulling disorder, are grouped together with other related conditions as body-focused repetitive behaviors (BFRBs). These aren’t “bad habits.” Instead they are complex, grooming-related mental illnesses that cause people to inflict damage on their bodies in a way that is difficult to conceal or control.

Body-focused repetitive behaviors are chronic, lifetime conditions that currently have no cure — or even an effective drug treatment option. The long-term remission rate with behavior therapy, the current gold standard, is only 10 to 20 percent.

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I began pulling out my hair around age 11 and picking at my skin shortly after that, consistent with reports that these behaviors often emerge during puberty. Before long, I had visible bald patches on my head and scabs on my face, which only worsened the slew of negative emotions I was experiencing as a preteen. I had absolutely no idea what I was doing to myself; neither did my mother, my teachers, or my pediatrician. If it hadn’t been for a sanctimonious boy in my middle-school science class who liked to teach me long words at random, I wouldn’t have known what trichotillomania even was.

Although the media landscape for the condition is changing, when I was a tween trying to investigate my own symptoms I was scared into secrecy by the gory images I saw online of arms covered in sores or completely lashless eyes. This feeling of isolation is often echoed by people attending conferences on these conditions. “I felt like I was the only one in the world doing this,” is a common refrain.

Even now, when a thriving community of people can share their stories on outlets like The Mighty, it is still challenging to move past the initial shock and stigma and into more nuanced discussions.

That trichotillomania, dermatillomania, and other body-focused repetitive behaviors such as onychophagia (compulsive nail biting) and rhinotillexomania (compulsive nose picking) are only now beginning to come out of the shadows belies how common they are. University of Wisconsin, Milwaukee, researchers estimated that 13 percent of U.S. adults engage in a body-focused repetitive behavior. That makes them more common than any other type of mental illness aside from anxiety disorders, which affect about 18 percent of U.S. adults. The TLC Foundation for Body-Focused Repetitive Behaviors, an organization I volunteer for, uses a more conservative estimate of 4 percent, but even that still encompasses nearly 10 million American adults.

Compared to what we know about other mental illnesses, the knowledge gap is huge when it comes to body-focused repetitive behaviors. Patients often have to teach their own physicians about their condition, as I had the misfortune of experiencing myself.

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I quit cognitive-behavioral treatment for my trichotillomania after only two sessions because I was already familiar with several practitioner’s manuals and realized that my therapist was omitting several of the most important therapeutic techniques.

Two years earlier, as a university student, I was disappointed to see body-focused repetitive behaviors limited to a one-sentence footnote in the textbook of my first college-level psychology class. My independent, unverified observations that the texture of my hair affected the severity of my pulling episodes, or that skin picking runs in my maternal line, drove my intellectual curiosity to take action and begin to fill in the research gaps myself.

The same year I quit therapy, I presented preliminary findings from my first research study, a neuropsychological comparison between trichotillomania and obsessive-compulsive disorder, at an annual meeting on these disorders. That I was able to present my own research alongside that of established researchers, and to have them take me seriously and ask thoughtful questions, is testament to how much ground remains to be covered.

The author presenting results of her research at the TLC Foundation’s annual conference in St. Louis in April 2017. Matt Ramey

One big area of controversy is how body-focused repetitive behaviors are classified in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). Up until then, trichotillomania had been considered an impulse-control disorder; dermatillomania wasn’t included at all. The DSM-5 relocated both disorders to the obsessive-compulsive spectrum, but some experts are unsatisfied with either category and believe that these behaviors should have a separate classification.

Given so many large-scale unknowns, body-focused repetitive behavior researchers are embracing Obama’s call to action with the BFRB Precision Medicine Initiative. While precision medicine initiatives for diseases like cancer and amyotrophic lateral sclerosis are being supported by federal funds, the National Institute of Mental Health has said it won’t fund further studies on body-focused repetitive behaviors until it sees demonstrated outcomes for specific genetic or neuropsychological targets.

In keeping with the trend of crowdfunded research, the TLC Foundation has raised nearly $2.8 million to run the BFRB Precision Medicine Initiative, which is being spearheaded by investigators at UCLA, the University of Chicago, and Massachusetts General Hospital.

The project aims to increase the low remission rate for body-focused repetitive behaviors from under 20 percent to at least 70 percent over the next seven years by identifying genetic and neuropsychological targets for new interventions. Another goal is to provide much-needed baseline understanding about the different subcategories of body-focused repetitive behaviors and the biological and clinical differences between them.

I haven’t been back to therapy since those two lackluster sessions, and I am far from cured of either trichotillomania or dermatillomania. I’ve pulled out probably half of the hair on my scalp over the past decade, and I still pick at every imperfection I notice on my face, sometimes to the point of bleeding.

But this year, after presenting my second research study, Jon Grant, the chair of the TLC scientific advisory board, congratulated me on a “very well-done, very detailed” study. A compliment like that makes the years of confusion and curiosity worth it, and gives me confidence that with the right focus, there could be so much more exciting research to come.

Kimi Vesel is senior associate of medical operations at Bioverativ and a volunteer for the TLC Foundation for Body-Focused Repetitive Behaviors.

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  • It always amazes me to hear about others’ experiences with Trich, and how similar they are to my own. I recently heard about a leave-in conditioner called Prohibere that uses hot and cold sensations to help manage the urge to pull. The girl that started the company is an engineering student that has Trich and came up with this solution herself in the lab, and said it helped her reduce pulling by 75%. This is the link to her website if anyone wants to check it out for themselves! https://www.biomaterix.com/products/

  • Amazing to know I’m not alone, troubling in other ways. So grateful to hear about research and potentially helpful intervention

  • KIM I,
    I am 64 and have had trich since I was 18. Have done everything from cognitive behavior, lots of different drug cocktails, hypnosis, eft, psychiatry etccc the first 30 years I pulled every single day. I found something that helped me for 6 year, then specialized hypnosis for trich helped for over a year. For the last year I haven’t been able to find any relief, until 2 weeks ago. I’ve started working with Robert & Gle at Trichotillomania relief & after the first coaching session I have not pulled (2 1/2 weeks). They look at it from a completely different way than I have & that you are. But so far so good. If you want more information send me an email.
    Best of luck,
    Joan

  • Curious is you have looked into a heavy metals challenge test, and screening for other pathogens. Functional medicine might be helpful. And biologic dentistry. They get to the root of sources of chronic inflammation.

  • I have Trichotillomania too…it started when Im grade five I noticed that I pulling some of my hair for nothing,I cant even stop myself for doing it…..because of this condition I feel that Im abnormal I think Im very ugly…but Im still hoping that there will be a treatment for this someday….Oh Im still doing it now…

    • “If it hadn’t been for a sanctimonious boy in my middle-school science class who liked to teach me long words at random, I wouldn’t have known what trichotillomania even was.” – Nicolas, you aren’t by any chance that same boy grown to adulthood, are you?

    • @Nicholas: The brain is the control center of the body. Every activity, including thinking
      – which in turn, controls behavior – is controlled by electrical impulses activated by chemical transmitters in the brain, traveling to their destination via the central nervous system. Behavior is determined by these same chemical reactions that control any other activity. There is no separating the “mind” from the brain, because in the end, it all boils down to chemistry. That’s the reason we cannot transfer consciousness; it’s all part and parcel of the electrical and chemical activity in the brain. The field of medicine concerned with the manifestation of abnormal brain chemistry (behavior, mood) is called psychiatry. While “behavior” per se is not disease, identifiable behavioral patterns that differ from the norm and result from abnormal chemical function of the brain are very much diseases. See brainrules.net for an easy to understand explanation of brain physiology and function operated by John J Medina, a developmental molecular biologist. I am absolutely certain that he knows far more about the brain than you or I ever will.

  • Thank you, STAT and Kimi, for publishing this story. It’s articles like this that bring will help end stigma for the (at least ) 10 million people with body-focused repetitive behaviors. We are quite proud of our community for coming together to fund the BFRB Precision Medicine Initiative — $2.8 million for research is no small feat for a small organization like TLC. People affected by BFRBs can volunteer for this study if they are near Los Angeles, Boston, and Chicago. More info at http://www.bfrb.org/research-programs-news/research-studies.

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