President 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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