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University of Utah publishes potentially exciting implications for future trichotillomania research___________________________________________________________________________
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The Hoxb8 gene in mice with excessive hair-grooming
At the end of May, a research team led by Nobel-prize winning scientist Mario Capecchi published a study with potentially exciting implications for future trichotillomania research.
A few years ago, TLC assisted Capecchi and his team of researchers at the University of Utah who were studying mice with a defect in the Hoxb8 gene, which caused them to compulsively groom themselves to the point of creating bald patches and sores on their skin. Drs. Capecchi and Joy Greer spoke about this research at TLC’s 2006 Annual Conference in Los Angeles. According to a press release from the University of Utah, the mutation in the Hoxb8 gene “results in defective microglia, which are immune system cells that originate in bone marrow and migrate from blood to the brain. Microglia defend the brain and spinal cord, attacking and engulfing infectious agents.” They were surprised when this mutation led to the development of pathological grooming behavior in the mice. Whether the Hoxb8 gene plays a role in trichotillomania in humans is not yet known.
In the recent study published in the journal Cell, the University of Utah team reported that they transplanted bone marrow from normal mice into mice with the defective Hoxb8 gene and that this transplant resulted in an end to the excessive grooming, or extensive improvement, in all the mice.
On behalf of TLC’s Scientific Advisory Board, Dr. Dan Stein, commented,
“This is a break-through article by a highly respected group, and I am delighted by the potential avenues it opens up for future research on disorders such as TTM. Hoxb8 is one of many genes that need to be investigated in conditions such as TTM. The TLC emphasizes that TTM is very common, under-treated, and that new research is required.
To date, studies of gene variants in psychiatric conditions (or complexly inherited medical conditions) have suggested that it is very rare for a single gene to play a large role in any one. Even in those rare circumstances where a single gene is important (and this includes more simply inherited medical conditions), it has been uncommon for new knowledge about a single gene to lead directly to a new treatment. At the same time, incremental advances in our understanding of particular molecules, and the way in which they function, provide an important path forwards for new discoveries in both medicine and psychiatry.”
TLC is committed to facilitating research into the genetics of trichotillomania and skin picking. We recently launched the Trichotillomania International Consortium for Research (TrIC Research) which is collecting well-phenotyped blood samples of people with trichotillomania to be available to researchers in this field. If you would like to support TLC’s efforts to advance research in the field of trichotillomania and skin picking, please donate to our research fund today!
Please note: Most of the press about this study is referring to trichotillomania as a “form of obsessive-compulsive disorder” which is not an accurate description of TTM. Hair Pulling Disorder is considered by many to be part of a spectrum of disorders which includes OCD and Tourette Syndrome, but hair pulling is a unique disorder from OCD, with important differences in treatment, and is not simply a variant of OCD.
N-acetylcysteine offers hope for hair pullers
TLC Scientific Advisory Board Member publishes new findings
A common dietary supplement may offer relief to some hair pullers. TLC Scientific Advisory Board (SAB) member Jon Grant, MD, JD, MPH, and his team at the University of Minnesota, Minneapolis, saw the results of their twelve-week, double-blind, placebo-controlled trial published in the most recent issue of the Archives of General Psychiatry.
Read the Abstract >>Read TLC's Synopisis of the study with further information on children >>
View a video of Dr. Grant explaining the study >>
These findings are exciting for a number of reasons. There is now another readily available tool for treating trichotillomania. Pharmacology studies for trich and related behaviors are rare, and the results of this study are so promising, it will likely lead to more research in the field. Ideally, larger and more complex studies that test a greater sample of patients for a longer duration will be funded.
This research is also noteworthy because it is one of the first studies of compulsive behaviors to examine the role of glutamate (a chemical that triggers excitement) rather than serotonin, a naturally occurring chemical most commonly linked to compulsive behavior.
(Stay tuned for another announcement from TLC next week!)
What is N-Acetylcysteine?
N-Acetylcysteine is an amino acid which can be found at nutrition and health food stores. This supplement affects levels of glutamate in a specific area of the brain, making it easier for patients decrease unwanted behavior. For that reason, Dr. Grant believes glutamate modulators such as N-Acetylcysteine may be applicable to other disorders, addictions, and compulsive behaviors.
Will it work for me?
Overall, 56% percent of the patients in this study were "much or very much improved," compared to only 16% taking a placebo (sugar pill or inert substance), according to the study.
"This study, the first to our knowledge that examines the efficacy of a glutamatergic agent in the treatment of trichotillomania, found that N-acetylcysteine demonstrated statistically significant reductions in trichotillomania symptoms," wrote Dr. Grant. It is important to note that 44% of the participants in this study failed to respond to the amino acid, and that this was a relatively small study.
As the researchers note, "Cognitive Behavior Therapy has shown benefit for trichotillomania and should be considered in conjunction with pharmacotherapies."
While N-acetylcysteine was well-tolerated by participants in this study, it is always important to discuss taking dietary supplements with your own physician. Please refer to the article for more specific information about the use of this supplement.
What's next?
Dr. Grant and his team hope their study will lead to further research into the effectiveness of N-acetylcysteine at higher dosages, studies of its use in the long-term treatment of trichotillomania, and its effectiveness in treating patients with various manifestations of the disorder. "As effective treatments for hair pulling emerge, it becomes increasingly important that physicians and mental-health care providers screen for trichotillomania to provide timely treatment," they wrote in their report.
Currently, Dr. Grant is recruiting participants for an additional pharmacology study. For more information, visit TLC's website >>
Be sure to check out all the Research Updates at www.trich.org.
And please, support the TLC Research Fund!
TLC Service Provider Member Charlene Blacer
Voted 2009 Notable Winner in Leading Moms in StartupNation.com
Charlene Blacer, founder of The Secret Mane (ranked No. 13), also hopes to partner up with charitable organizations as part of her desire to make a difference. Three-year-old The Secret Mane is a specialty salon in Stroudsburg, Pennsylvania, that caters to sufferers of various types of hair loss, 90 percent of whom suffer from a hair-pulling disorder called Trichotillomania. To help build awareness and assist financially disadvantaged “trich” sufferers get necessary hair treatments, she formed HelpMe2Stop.org. She envisions the nonprofit partnering with qualified salons across the country, giving suffers access to more treatment centers and hosting events for the cause. “My dream is for trich to come out of the closet and to create awareness about the condition,” says Blacer, 37. “[Picture] what the breast cancer community is doing for cancer.” Keep reading >>>
Trichotillomania Featured on MSNBC.com
February 25, 2009
TLC is always pleased to support positive news coverage about trichotillomania: education and awareness is a primary goal! This winter we assisted a producer in his effort to put together a story about trich featuring TLC Members Marc Foner and Amy Curcio. We were all disappointed to learn that this story, originally intended to air in January on the NBC Nightly News, had been bumped to web-only status.
Please take a moment to view the story on MSNBC.com, and share the link with your friends and family members. This will not only distribute the video to a wider audience, but also show NBC that trichotillomania is a story that warrants prime-time coverage.A Year of Change & Growth
Christina Pearson Announces New Roles at TLC
February 25, 2009Dear Friends,
I have some extraordinary and fantastic news to share with you. Especially now, in this time of economic insecurity when we seem to be inundated with bad news, I am grateful to be able to share with you some exciting changes happening at TLC.As our organization has thrived, our need has grown for both good administration and visionary inspiration. To meet this challenge, we are now undertaking a significant shift and expansion of TLC Staff positions. I am taking on a new role and different responsibilities. My new title will be Founding Director (I love it!), and I will no longer act as Executive Director.
Jennifer Raikes, who has been TLC’s Board President for ten years (many of you know her through her wonderful documentary film Bad Hair Life) will be TLC’s new Executive Director. Joanna Heitz, who has done a transformative job as Treasurer, has been elected TLC’s new President of the Board of Directors.
I am deeply excited about this change and feel inspired and energized as we move forward. As Founding Director, I will focus on alliance building, outreach, networking and fundraising, and creative program development. In this role, I will continue to work closely with Jennifer and Joanna, and all of TLC’s staff, Board, SAB, and volunteers. This change will enhance my capacity to bring our cause to the larger public that still has not awakened to the importance of our mission. This work is my passion, and I have devoted my life to this area of human need. You’ll be hearing a lot from me!
I am thrilled to my core that TLC has reached a place of strength and maturity that enables this change to happen. As the founder of an organization that gave voice to a disorder that had none, this development is deeply validating to me. Not only will it multiply manyfold our ability to function on the community’s behalf, it tells me that my original dream has come true: to establish a viable organization working for the betterment of those who suffer from trich and related problems.
TLC has attracted and developed leaders who share my deep devotion to our mission, which I find particularly satisfying. Jennifer and Joanna bring enormous passion, knowledge and ability to their new roles. Jennifer has worked in close partnership with me for the last decade and brings skills and expertise to her new position that will benefit TLC greatly.
She is highly motivated, deeply creative and very business savvy. She has a deep working knowledge of nonprofit process and the social responsibility of working in the nonprofit sector. She understands TLC’s needs in areas of research, outreach and education, and frankly, I cannot think of anyone better suited to lead our operations at this time. What a joy this is to me. I am enclosing a short introduction of Jennifer and Joanna for those of you who don’t already know them from their long service to our community.
Through the tremendous support of TLC members Nancy Perlman and Tom Klingenstein, and an anonymous donor, this opportunity to bring Jennifer on as Executive Director and create a new position for me is funded through the end of 2009. We are incredibly grateful to them. But as we move forward, we will need to identify new ways to raise funds, and I look forward to some of the exciting ideas that Jennifer is bringing to the table. We have new projects in development that we want you to know about, be inspired by, and help us grow!
The truth is, we’ve all gotten TLC to where it is today, together. My passion and dedication has been a big part of it (and will continue to be), but our progress would never have happened without the support and participation of the TLC community. I personally and deeply thank each and every one of you who are current members, and those who came before you.
In closing, I am so pleased to be sharing such positive news about our future. The time has come to make huge forward strides to better understanding, more effective treatment, and finding a cure. It will take time, energy and money, but I have no doubt: we WILL reach those who are still suffering alone, we WILL find answers, and we WILL create a better world for our children. With a dedicated team like ours —and that includes you—there’s no question we’ll succeed!
In Love and Service,
Christina Pearson
Founding Director
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H&R Block Ends Offensive Ad
January 9, 2009
In response to outcry from the TLC community, H&R Block has ended the broadcast of a television commercial which featured people pulling out their hair. Director of Brand Promotion, Kelli Ramey, reported to TLC on 1/9/09, “all network spots have been replaced with the new material as of today and all syndicated spots should be replaced by Sunday. Please know that we reacted to this as quickly as possible with replacement ads, but there is often a delay as the stations change out programming and implement new advertising. My apologies that your members have continued to see the spot — after this weekend that should no longer be the case.”
TLC hopes to work with H&R Block to provide positive educational outreach to help repair the damage done by this unintentionally offensive commercial. Much greater public awareness is needed. Thanks to our members who have pushed for this action!
Professional Training Institute Multimedia Training Program: TLC's Virtual PTI
One of the biggest problems faced by the TTM community is lack of trained treatment providers. The sad thing is we do have effective treatment, just not enough providers! These days, if you live in a large urban area, chances are there may be one or more knowledgeable practitioners available locally. But, if you live in many smaller cities, townships, or rural communities the probability of finding a trained professional goes way down.
To alleviate this problem, the Trichotillomania Learning Center set out to create and promote a therapeutic training program to increase access to effective treatment.
Under the guidance and supervision of Charles Mansueto, PhD, Director of the Behavior Therapy Center of Greater Washington and a longtime TLC Scientific Advisory Board Member, along with other SAB associates, a three-day comprehensive training program called the Professional Training Institute (PTI) was developed several years ago to meet this need for more practitioners. Out of this training program has now come the creation of a multi-media training module, or Virtual Professional Training Institute (VPTI) that will be a fantastic way to reach therapists in every corner of the world!
The VPTI will include DVDs, workbooks, manuals and follow-up supervision by expert clinicians. This is a very important project, and has been funded entirely by TLC members.
Our goal is to have the full training package available to therapists in the Spring of 2010. Stay tuned for more information!
Update on the Trichotillomania Impact Project (TIP):
As the result of a scientific meeting with staff members of the National Institute of Mental Health (NIMH), the TLC Scientific Advisory Board (SAB) embarked on a project to fundamentally prove the significance of the public health impact of trichotillomania. Up to that point it was known to cause problems, but no one really knew what the impact of the disorder was. Without this important information, research could not move forward.
In 2006 the TLC SAB published the results of a large and in-depth internet survey on trichotillomania. The Trichotillomania Impact Project (TIP): Exploring Phenomenology, Functional Impairment and Treatment Utilization and was printed in the December 2006 issue of the Journal of Clinical Psychiatry.
The publication of the TIP data has revolutionized the field of trichotillomania by opening its impact up to a large therapeutic community. Since its publication an additional 15 scientific journal have been written utilizing TIP data.
The upshot of this work is profound; it is having a huge impact on how to classify and treat the disorder, and is laying the foundation to move forward in several areas of research. Over the next year or two it will play a very significant role in determining new classification and diagnostic criteria information to be publishing in the next edition of the Diagnostic and Statistical Manual Revision 5 (DSM-V).
Another project funded by the TLC membership and spearheaded by the TLC SAB!