SURPRISING NEW FINDING ABOUT TRICHOTILLOMANIA PART 2-WHERE HAIR PULLERS LIKE ME ARE NOT ALONE;

Boston, MA -- 12/31/15 -- Katie Koppel puts on her wig after posing for a portrait near her home on December 31, 2015, in Boston, Massachusetts. Koppel suffers from trichotillomania, a impulse control disorder characterized by compulsive urge to pull out one's hair, leading to hair loss and balding. She said that she has suffered from the condition since she was 8 years old, and gets a new wig approximately every 12 to 18 months.  (Kayana Szymczak for Narratively)

There is no cure or proven treatment for trichotillomania, or compulsive hair pulling. After years of suffering in silence, a support system of “trichsters” helped me hold my head high.

My first thought was that I’d come late to the party. Groups had already formed in the ballroom of the Marriott Hotel in Chicago, circles of giggling teenage girls and the shy, downcast younger ones who remained at their mothers’ sides. I spotted a young woman about my age and sat beside her. She was a 22-year-old college student with light brown hair and fringe bangs.

“Lashes and brows,” she said, as if this were the natural progression from discussing journalism lectures. “I’ve pulled out my hair since I was five.”

“Scalp,” I said, my voice shaking. “Puller since I was eight.”

She nodded. I heard the “pat-pat” of a microphone and looked up to see Jennifer Raikes, the Executive Director of the Trichotillomania Learning Center, standing at the podium, poised to speak.

“Before I begin, I’d like to thank you for your courage,” she said. “Everyone who comes here is a warrior in his or her own way.”

I scanned the room: headscarves, wigs, bandanas, beanies, baseball caps, headbands — we were a rainbow of concealment. Each of us was unique, in terms of how open we were with others, how much hair loss we’d experienced, how far we went to hide our baldness. But we were also a room full of clones. We had all experienced being bullied and shamed, had at one point believed we were the only one to do what we did. We were comforted and excited, but terrified in equal measure. We could see with our own eyes that what we experienced was real, yet still half-believed this must be a dream — a ballroom full of people who plucked their hair?

When Jennifer finished speaking, we dispersed into sessions. Everyone was hugging. We didn’t know each other, but by virtue of our attendance we knew each other’s stories, understood one another’s deepest secret. How could we not embrace?

I pulled out my first hair when I was eight years old. One winter evening I lay on the couch, alone, watching Nickelodeon. I put my hands to my face, thumbing my nose, mouth and eyes with the pads of my fingers. I touched my eyebrow. There was an unusual, prickly hair, and I pinched it between my thumb and pointer finger, then tugged. And tugged again, and again.Thirty minutes later, I looked in the mirror. I had half an eyebrow, which was suspended awkwardly over my eye, like the smudge of an eraser.

My parents saw I was losing my hair, but they couldn’t understand why. Doctors ruled out the possibilities: lupus, thyroid disease, alopecia. No one noticed the calloused fingers of my pulling hand, or how I secluded myself for hours, only to emerge with conspicuous spots of bare red skin. My mother was a nurse with exceptional intuition, but not even she could see something she wasn’t looking for — something she and other professionals didn’t know to look for.

Katie Koppel poses for a portrait at her home on December 31, 2015, in Boston, Massachusetts. Koppel suffers from trichotillomania, an impulse control disorder characterized by a compulsive urge to pull out one's hair, leading to hair loss and balding.

Nearly a year after my first pull, my mom searched “female hair loss” on Google and found a new suspect: trichotillomania, a hair-pulling disorder found most commonly in adolescent females. Hair pulling affects fifteen million Americans, and though it receives far less attention in the media than anorexia, it is three times more common. There is no cure and little treatment.

Three years after my first pull, I attended a pool party. I was still plucking my eyebrows, but I would move to my scalp six months later. When my mom dropped me off at the house, I grabbed my pink towel from the backseat and headed to the bathroom to inspect my morning’s work. My eyebrows were neat and in place — my mom had leant me one of her eye pencils and I had sketched in brows on my bald skin. My real eyebrows were nonexistent, except for a few strays that had escaped my probing fingers. The makeup ritual had become difficult; now I had to guess at the placement of my actual eyebrows, so that my efforts to recreate them were clumsy. I’d already tested the pencil’s resistance by holding my face under the faucet. No smudges. I could get in the water, so long as I didn’t dunk.

Girls were already swimming when I arrived at the pool, flinging from the diving board with arms flexed overhead, torsos rigid with focus. A friend spotted me and climbed out of the pool. “Why aren’t you in?” she asked casually, wringing out her inky black hair. I smiled, hoping this would serve as a proxy for words.

It happened in a second. She pushed and I was dropping into the water, the impact slapping my face hard. When I bobbed to the surface, my friend was laughing. She hovered over me on the side of the pool, then jumped in the water and returned to the group. I kept my head down, grabbed my pink towel, and ran inside the house.

After the party, my mom and I drove home in silence. All my work, the careful pencil dashes, had been washed away. There was nothing for me to tell — the story was visible in my bare puffy pink skin

Trichotillomania is officially listed under Obsessive-Compulsive and Related Disorders in the Diagnostic and Statistical Manual of Mental Disorders. More recently, experts have conceptualized trichotillomania as a “body-focused repetitive behavior” (BFRB), a family that includes skin picking and severe nail biting. Two in every 50 people have a body-focused repetitive behavior.

Most people with trichotillomania pull from their scalp, but many pluck their eyelashes and eyebrows, and some from their limbs and pubic area. Hair pullers — colloquially known as “trichsters” — usually pull while alone. For me, hair pulling constitutes a sort of trance. Time stands still and I have little awareness of what I’m doing.

Hair pulling is not an act of self-punishment. For most, hair pulling is gratifying in a sensory way; unlike self-injurious acts such as cutting and burning, there is no intent to harm, and the act is not physically painful — rather, it feels soothing

Koppel puts on her wig.

Jennifer Raikes, 44, a former hair puller, says, “We have a double whammy of shame.” First, hair pullers appear to be self-injuring; given our cultural belief in self-control, hair pullers are blamed for their behavior. Second, hair pulling affects sufferers cosmetically and this makes them susceptible to others’ judgments. The Trichotillomania Learning Center’s envelopes have never been able to be marked with the organization’s name; recipients fear that their mailman and family members will see the word “trichotillomania.” Most do not ask for donations and support from loved ones due to their intense shame.

The Trichotillomania Learning Center (TLC) is the sole organization worldwide to address hair pulling and related disorders. The non-profit was founded in 1991 by Christina Pearson, 59, a California native who, at the age of 33, discovered that she was not alone in her hair pulling after her mother heard it mentioned on the radio. “It enraged me,” Pearson says. She had spent two decades struggling with a disorder that had led her to drop out of high school, only to discover that millions of others had been suffering along with her. “And then I found out there were no treatments,” she says.

Before TLC was founded, it was believed that hair pulling emerged from deep unhappiness, particularly related to childhood trauma. With almost no information available on the disorder and no proven treatments, hair pullers experienced a lifetime of struggle, both with their overwhelming compulsions and with the shame and alienation that accompanied those little-understood behaviors.

“TLC grew in response to the needs of a community that was below the radar,” Pearson says. She created an annual retreat and a conference, fostering the “Oh my God” moment brought on by the simple realization: I am not alone. She also assembled a group of researchers and clinicians. Dr. Nancy Keuthen, a Boston-based psychologist and member of the Scientific Advisory Board says, “TLC provides a much-needed forum for us to share our research findings, discuss clinical approaches, develop programs to train new clinicians, and identify ways to educate professionals and the lay public.” In 2006, the Scientific Advisory Board released the Trichotillomania Impact Project, a paper that served as the first, powerful validation of hair pulling as a real disorder, one that had significant societal impact and deserved scientific study. Though Pearson has since resigned from TLC, she feels proud of the work she has accomplished: “It feels good to have become part of the grounding of a field that didn’t exist before,” she says.

There are no FDA-approved drugs for trichotillomania. Many lack access to treatment options, as few providers are trained to treat trichotillomania and related disorders. “We still know so little about the underlying neurobiology of these disorders,” Dr. Keuthen says. “We do have some treatments that can help some individuals some of the time, yet we don’t know who is most likely to benefit.” Trichotillomania has a ten to twenty percent remission rate, meaning that a diagnosis likely means a lifetime condition. New breakthroughs in research provide hope that these rates could increase in the future.

Jennifer Raikes, a recovering eyelash and eyebrow puller, discovered TLC in 1995. “For me, I recognized the complicated behavior that this is,” she says. “The pulling felt biological and innate.” Hair pullers tend to have highly specific rituals associated with their behaviors; while some target particular hairs, others rub the follicle against their lip or, in a minority of cases, ingest the hair itself. “It’s naïve to believe trichotillomania is a monolithic disorder,” says Dr. Darin Dougherty, 49, a member of TLC’s Scientific Advisory Board and a leading researcher of BFRBs. Experts believe that genetics account for these variations, which could provide clues to more effective, targeted treatment.

The BFRB Precision Medicine initiative was launched by the Scientific Advisory Board in 2014. Dougherty and others hope to use personalized medicine to develop treatments for trichotillomania and other BFRBs. “We realized that we don’t have the molecules or medications or behavioral modes to improve remission rates,” Dougherty says. “The way up is personalized medicine.” The biggest challenge for this research has been funding. Even though the prevalence of trichotillomania is higher than many conditions, the disorder is largely ignored. “This has had to be a grassroots effort from people with the disorders and their loved ones,” Dougherty says.

Trichotillomania and BFRBs are blessed with a fiercely committed, brilliant team of supporters. “There’s been no glamour,” Raikes says of the Scientific Advisory Board. Those in the field often do not receive recognition for their efforts because few outsiders understand the importance of BFRB research. “Yet many of our members have been with us for decades,” Raikes says. This intense commitment is a hallmark of TLC. “We are a uniquely human and warm organization,” says Raikes. “This grew in response to pain and isolation, so trying to foster community remains the backbone of the organization.” TLC recruits experts to the field by luring them to the annual conferences. “Scientists and clinicians go to the conference and fall in love,” Raikes says.

The annual TLC conference brings together 500 people: sufferers of BFRBs, their family members and friends, and clinicians and researchers. The conference offers sessions with topics ranging from animal models used in research studies, to makeup tutorials, to support groups focused on college life and dating. “The fact that it’s a small field means you’re meeting most of the top clinicians and researchers,” Raikes says. For the BFRB experts, the annual conference serves as inspiration for their work. “I always leave feeling super-charged with a renewed commitment to the field and passion to make a difference in the lives of those with BFRBs,” says Keuthen.

The Trichotillomania Learning Center, as well as understanding of the disorders it represents, is evolving. By conceptualizing BFRBs, TLC is putting a new category of disorders on the map. “It’s a moment where things are shifting in all areas,” Raikes says. BFRB Awareness Week, which fell on the first week of October, yielded hundreds of articles, pictures and videos of individuals taking off wigs, wiping off makeup, and revealing their long-concealed battles. Pearson says, “We will never go back in the box. Even though many people are still hiding, the disorder is not.”

source;http://narrative.ly/

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