UNC LAUNCHES GLOBAL EFFORT TO IDENTIFY GENES THAT CONTRIBUTE TO ANOREXIA NERVOSA

Last week marked the launch of the UNC Center of Excellence for Eating Disorders Anorexia Nervosa Genetics Initiative (ANGI) study (http://www.unceatingdisorders.org/angi). ANGI is an international research effort, with research teams at UNC and in Denmark, Sweden, and Australia working together to unlocking the mystery of anorexia nervosa. From decades of research, we know that genes influence the risk for anorexia. Early family studies found that first degree relatives of individuals with anorexia were 11 times more likely to develop AN during their lifetime than relatives of individuals with no history of anorexia (Strober et al., 2000). Later work has suggested that the heritability of anorexia, or the proportion of observable differences in anorexia between individuals due to genetic factors, is between 28% and 74% (Trace et al., 2013). However, the specific genes be contributing to anorexia nervosa risk are still unknown.

The goal of ANGI is to finally identify these genes. ANGI will recruit over 8,000 individuals with current or past history of anorexia, as well as individuals with no history of an eating disorder. Participants are asked to provide clinical information and blood samples. From this information, we will be able to explore whether there are specific genes that may increase risk for the development of anorexia. One of the most exciting aspects of ANGI is that individuals have the ability to participate from anywhere in the US! If you cannot come in to UNC, we can mail a sample kit to you and help arrange to have your blood drawn at your local laboratory at no cost to you. To say thanks, we’ll send you a $25 Amazon.com gift card! Together, we can work towards finding the cause and the cure for anorexia nervosa.

If you are interested in participating in ANGI, please email angi@unc.edu or call 919-966-3065.

References:

Strober, M., Freeman, R., Lampert, C., Diamond, J., & Kaye, W. (2000). Controlled family study of anorexia nervosa and bulimia nervosa: evidence of shared liability and transmission of partial syndromes. American Journal of Psychiatry, 157, 393-401.

Trace, S.E., Baker, J.H., Peñas-Lledó E, Bulik, C.M. (2013). The genetics of eating disorders. Annual Review of Clinical Psychology, 9, 589-620.

UNC Science Expo

On Saturday, April 13, 2013, the UNC science community gathered along Cameron Avenue in Chapel Hill, NC for the second annual UNC Science Expo hosted by the Morehead Planetarium. The UNC Center of Excellence for Eating Disorders featured a booth at the event, along with over 80 other exhibitors and 100 hands-on activities, demos, lab tours, stage presentations, and more. Lindsey and I spent the beautiful spring day showing the rubber hand illusion to the science enthusiasts. For a detailed account of the rubber hand illusion, please visit Katie Weinel’s blog post from January 2013 (click here).

Everyone from young students on field trips to adults seeking new knowledge flocked to our booth to learn about the rubber hand illusion. A fake hand sure attracts a lot of attention! After explaining the basic purpose of our study, the measures that were employed, the target population, and the general findings, we gave people the opportunity to participate. Everyone really loved it and thought it was an interesting project! In addition, some people were curious about the general topic of eating disorders. It was nice to educate and openly discuss our area of study while hopefully reducing the stigma and stereotypes associated with these disorders.

Attending the science expo was UNC’s new chancellor-elect, Carol Folt. As a former research instructor in biological sciences at Dartmouth College, Folt represents and supports women in science. Her personal research interests include metal toxicity and the effects that dietary mercury and arsenic have on aquatic and human life. We welcome UNC’s first female chancellor, and we are glad she celebrated with us for a day of science!

Overall, it was fun to be able to share the rubber hand illusion with my fellow Tar Heel community. The greatest thing I took away from the expo was the feeling of all-around excitement and passion for science on the UNC campus, especially from the youth. Carolina can look forward to a lot of bright, young scientists in its future!

By: Morgan Walker

Reaching Adolescent Boys in the Treatment of Eating Disorders: What We Can Learn from the Help-Seeking Literature

Boys are beyond the range of anybody’s sure understanding, at least when they are between the ages of 18 months and 90 years – James Thurber

As a clinical psychologist working in the field of eating disorders, when people find out what I do, I am often asked, “Do you ever see teenage boys struggling with eating disorders?” I try to answer this question as directly and honestly as possible. “Yes, but far less often that I would expect”. People seem surprised by this answer, both that boys struggle with eating disorders and that I would expect to see more of them presenting for treatment. Let’s look at the facts.

- Adolescent males comprise approximately 5-15% of cases of anorexia nervosa and bulimia nervosa (Becker, Grinspoon, Klibanski, & Herzog, 1999).

- Approximately 40% of cases of binge eating disorder (BED) occur among adolescent males (Becker et al., 1999).

- Kjelsås and colleagues (2004) found that 6.5% of males met diagnostic criteria for an eating disorder, with most males meeting diagnostic criteria for Eating Disorder Not Otherwise Specified (EDNOS).

- A recent study by Dominé and colleagues (2009) found that approximately half of adolescent males in a community sample reported experiencing some concern about their eating, with approximately 20% describing having engaged in at least one type of disordered eating behavior (e.g., self-induced vomiting).

- The National Eating Disorders Association estimates approximately 10 million males in the United States struggle with an eating disorder.

So I am left wondering, why is it that we do not we see many males in treatment, and what are the barriers? Some have argued that current diagnostic classification systems (e.g., DSM-IV) could do better at capturing adolescent males’ experiences of eating disorders and that clinicians have a higher threshold for diagnosing eating disorders in males (Muise et al., 2003). Others, like Dr. James Lock, have commented that valid and reliable measures of boys’ symptomology are lacking. In general, what we know is that they are out there, and they are not getting help. A recent piece on ABC News entitled, Men with Eating Disorders Have Tougher Time Getting Help, highlights the struggle adult males and their families go through to access services and points to answers from the world’s leading professionals on why this may be the case (please see link to story below).

Help-Seeking Behavior as a Barrier for Reaching Males

We face a number of barriers when reaching males with eating disorders. At the individual level, one major challenge is help seeking behavior. There are two sources from which adolescents generally seek help: informal sources, such as family and friends, and more formal sources (e.g., guidance counselors, physicians, psychologists, etc.). Help seeking can be divided into three stages: (1) recognizing there is an issue; (2) deciding to seek assistance actively for the issue; and (3) selecting a source of help (Anderson, 1995). Unfortunately, only a small proportion of youth will seek out professional sources of help when faced with a serious problem. In fact, the National Survey of Mental Health and Wellbeing revealed that only 29% of youth with a mental health concern had actually sought professional help over a one year period (Sawyer et al., 2000). It is also known that boys, in general, are less likely to seek help than girls, and that even when they do seek assistance, they are more likely to turn first to informal sources like friends and family before they consult a professional (Boldero & Fallon, 1995; Schonert-Reichl & Muller, 1996). This becomes even more complicated within the field of eating disorders when we take into consideration that adolescents with eating disorders present a unique challenge; the illness is ego-syntonic (i.e., consistent with one’s self-image; not something a person wants to get rid of)  in that youth typically do not want to engage in recommended treatment in the first place. Not only does this place them at greater risk for not seeking help and being formally identified, but it also increases the chances of treatment dropout when they do actually access formal sources of support.

Reaching and Engaging Boys in Treatment

There are a number of ways we can facilitate adolescent males’ engagement in help seeking. First, knowledge is power and a catalyst for change. Providing adolescent males with psychoeducation on the nature of eating disorders and the role of biology and genetics has been suggested to help with reducing stigma surrounding seeking formal support. Although the data on how effective this is as a strategy in males is lacking. Helping them to understand that biology is at play, but that biology is not necessarily destiny may be essential. Second, seeking out boy’s informal support networks (e.g., friends, teachers, athletic trainers, and coaches) and educating them about eating disorders and how they manifest specifically in boys is important. We cannot expect the informal sources of support to be able to recognize the signs and symptoms unless they are aware of those signs themselves. Further, we need to begin to challenge some of the common misperceptions that get in the way of us seeking support for the males in our lives (our fathers, sons, friends etc.). Challenging thoughts like “he is just stretching out”, “don’t worry, he will fill out”, or “he is just going through an exercise phase or a healthy phase” will go a long way in facilitating formal help-seeking.

Lastly, in order to have someone be willing to seek help, they must perceive that it will in fact be helpful. Perceived helpfulness is an important variable that can positively impact the decision to seek professional care. Many of the traditional approaches to treatment are perceived as undesirable to boys (e.g., sitting in talk therapy), even though they may result in symptom reduction. Boys actually report finding action-oriented services that utilize multimedia activities, sports and recreation, and a hands on approach more helpful than traditional counseling (Smith 2004). Combining therapy methods that have been shown to be effective while integrating action oriented treatments (e.g., Cognitive Behavioral Therapy offered online, Cognitive Remediation Therapy) may help to get boys engaged and on the road to recovery.  We need more research on how best to adapt treatments for boys that incorporate these principles known to make a difference in how boys engage in and respond to treatment.

Selected References

ABC News (Feb., 2013). Men with eating disorders have a tougher time  getting help.   http://abcnews.go.com/Health/anorexic-men-harder-time-diagnosis-treatment/story? id=18591296#.UWxUb7Xqn44

Becker A. E., Grinspoon S. K., Klibanski A., & Herzog D. (1999). Eating     disorders. New England Journal of Medicine, 24, 1092–1098.

Boldero, J., & Fallon, B. (1996).  Adolescent help-seeking behavior: What do they get help for and from whom? Journal of Adolescence, 18, 193-209.

Dominé F., Berchtold A., Akré C., et al. (2009). Disordered eating behaviors: What about boys? Journal of Adolescent Health, 44, 111-17.

Muise, A.M., Stein, D., & Arbess, G. (2003). Eating disorders in adolescent boys: A review of the adolescent and young adult literature. Journal of Adolescent Health, 33, 427-35.

Schonert-Reichl, K., & Muller, J. (1995). Correlates of help-seeking behavior in adolescence. Journal of Youth and Adolescence, 25, 705-731.

Smith, J. M. (2004). Adolescent males’ views on the use of mental health counseling services. Adolescence, 39, 77-82.

By: Brad Mac Neil, PhD, Licensed Clinical Psychologist

Me, My Son, and My Eating Disorder

I had the honor of appearing on a HuffPostLive segment with Jennifer Rhodes where we discussed various topics related to pregnancy, parenting, and eating disorders. You can view that segment here: http://live.huffingtonpost.com/r/segment/pregnant-anorexia-eating-disorders/514b469378c90a2ee800007c. I invited Jennifer to write a guest blog post for Exchanges, and she wrote this wonderful piece sharing her experiences of being the mother of a boy. Thanks to Jennifer for sharing her very honest story with our readers. You can read more by Jennifer on pregnancy and eating disorders at http://www.babble.com/pregnancy/my-pregnancy/anorexic-pregnancy-weight-gain/. -Cynthia Bulik, PhD

*Trigger caution: We care deeply about the well-being and comfort of the readers of this blog. If you are prone to being triggered by reading about others’ eating disorder-related thoughts or experiences, you may choose to exercise caution and/or seek support before reading this post. The take-home message is very important; however, the author is explicit about her struggles.

Me, My Son, and My Eating Disorder

I awoke in a draped-off recovery area, groggy from an unplanned C-section. Due to a dramatic plummet in my blood’s platelets during labor, the procedure had to be performed under general anesthesia. Next to me in a bassinet, my newborn baby slept soundly.

“Is my baby ok?” I called out, half-panicking, to anyone who was within earshot.

“He’s perfect,” answered a nurse, making her way through the curtains.

“He? It’s a boy?” I had resisted the urge to find out the sex of my baby, instead wanting to be surprised.

“It’s a boy!” she smiled.

It’s a boy. I can stop fighting my anorexia, I remember thinking. I don’t have to worry about passing my eating disorder on to a boy. Sure, boys aren’t immune to disordered eating but, I figured, he would not be nearly as prone as a girl to inheriting my preoccupation with thunder thighs, muffin-tops and a bloated belly. I’d continue the sound eating practices I’d established during pregnancy so as to stay physically healthy but even if the neuroses lingered, with a boy, nothing would be passed on. It’s safe to stop fighting, I decided.

I decided wrong. While the likelihood of a boy developing an eating disorder is statistically lower than that of a girl, I hadn’t factored in one very important fact: regardless of whether or not my son developed an eating disorder himself (which, admittedly, he still could), the way I sized myself up was going to have a lasting impact on the way my son sized up other women.

After my son was born I was able to drop the pregnancy weight rather quickly; when I was discharged from the hospital I had only 5 pounds left to lose. However, even after those extra pounds were gone, my weight had redistributed and my body was irreversibly changed. I suddenly had love handles, which I’d never had and did not love. My stretched-out stomach bloated to second trimester-proportions after eating. My still-swollen c-section scar formed a sausage-like ridge, visible under my jeans.

I spent many days weeping over the loss of my anorexic figure, which I knew I’d never regain, not just because of the pregnancy but because it wasn’t in the best interest of my son (or myself) to starve down to a “comfortable” size.  In those early days I’d spend naptimes scrutinizing my new body in great detail, pinching, poking and prodding the unwelcome lumps that were now a permanent part of me. “I’m a fat cow,” I’d announce to my husband several times a day. “My body is ruined.” And while I would never take back the birth of my son in exchange for my pre-baby body, I was still grappling with how to accept what I now looked like.

“You’ve got to stop talking like that in front of him,” my husband would say. And I knew I had to, but I couldn’t. And besides, I rationalized, what’s the worst that could happen? He grows up acknowledging that his mom has an imperfect body? It’s the truth, after all. What’s so wrong with that?

It took nearly a year for me to realize what’s so wrong with that. Just as my attitudes about other things are going to influence my son’s thoughts and opinions, my attitudes about weight and what a woman should look like are going to color the way he sees the world. In essence, what I had been inadvertently preaching is that a woman’s value is inversely proportional to her size. And while I was holding myself to unhealthy and unrealistic standards, I would never want to teach my son to be as hard on other women (and, for that matter, himself and other men) as I am on myself.

This realization has ushered in an entirely new feeling of responsibility. My eating disorder is not exclusively “mine” anymore. As a parent, the boundaries of disordered eating blur; the risk of dysfunction spilling over into one’s children of either sex— in even in the most abstract and obscure ways—is always there.

So, while I still struggle with my appearance, I am taking a more proactive role in conquering the negative self-talk and the looming thoughts that are detrimental to my recovery. I would do anything for my child, and this is my chance to prove it. That starts with acknowledging that just because ‘it’s a boy’, it doesn’t mean my fight with anorexia is over; really, it means it’s just beginning.

By: Jennifer Rhodes

Regional obesity rates and the challenges of self-report in research

In research, it’s common to use self-report (having study participants report on their own characteristics, like weight). Self-report is definitely less expensive and more convenient than having researchers measure the characteristic in question.  But is self-report accurate?

When it comes to weight, self-reported weight is generally highly correlated with researcher-measured weight. That said, there is some evidence that individuals at higher weights tend to under-report their weight (i.e., report a number that is lower than the one obtained when their weight is measured by a researcher). Conversely, individuals at lower weights, such as individuals with anorexia nervosa, may over-report their weight (i.e., report a number that is higher than the one obtained when their weight is measured by a researcher).

A recent study from the University of Alabama at Birmingham suggests that self-report of weight and height leads to incorrect conclusions about regional obesity rates. For example, for the South Atlantic region, a collection of states including North Carolina, obesity rates based on researcher-measured height and weight were over 5% higher than obesity rates based on self-reported height and weight.

Does this mean researchers should stop using self-report?  In my experience, self-report is more problematic when you’re interested in using the characteristic in question (e.g., weight) to categorize participants into one group or another (e.g., not obese or obese). However, when you’re interested in relating that characteristic to something else (e.g., looking at how weight relates to being breast-fed as a child), the use of self-report can be less problematic.

It’s important that researchers relying on self-report make efforts to increase its accuracy. When doing so, researchers should consider two different sources of inaccuracy: misinformation (when participants don’t have accurate information) and misrepresentation (when participants intentionally report inaccurate information). Researchers can employ a variety of strategies to reduce both sources of inaccuracy, such as using rewards to incentivize accurate reports. Further, technology holds the potential to help researchers move away from reliance on self-report, as seen with wearable cameras that can be used to track diet, as well as other lifestyle factors (http://www.healthline.com/health-news/wearable-cameras-for-lifestyle-tracking-020513).

By: Dr. Kristin Javaras

Le, A., Judd, S.E., Allison, D.B., Oza-Frank, R., Affuso, O., Safford, M. M., Howard, V. J., & Howard, G. (in press). The geographic distribution of obesity in the US and the potential regional differences in misreporting of obesity. Obesity. DOI: 10.1002/oby.20451

Stone, A. A., Bachrach, C. A., Jobe, J. B., Kurtzman, H. S., & Cain, V. S. (2000). The science of self-report: Implications for research and practice. Mahwah, NJ: Lawrence Erlbaum Associates.

UNC Eating Disorders Program Monthly Multi-Family Meal Program: One Year Later

In January of last year, The UNC Center of Excellence for Eating Disorders launched a monthly program to bring together parents, siblings, spouses and patients in our inpatient and partial hospitalization programs. Each month above the hospital Starbucks, families attend an hour-long group session led by our treatment team.  After the session, patients are served a buffet-style dinner together with their family while receiving meal support from the clinical team including therapists, social workers and dieticians. During this real-world buffet meal, we help families work together as a team and expand caregivers’ skills to foster recovery in their loved one.

A year later, we are happy to report that the program has been a great success! Around 45 to 65 participants attend the Multi-Family Meal Program each month—a fabulous turnout that has absolutely surpassed our expectations. Families say that they really appreciate the opportunity to connect with other families who are also struggling with these bewildering disorders. It’s a relief to know that they’re not alone and there are other families who understand. They also appreciate having new skills in their toolbox to provide increased support and encouragement so that they feel prepared for tough mealtimes.  Our team also is grateful to have the opportunity to provide additional psycho-education and support to families and the opportunity to practice supporting their loved one during a challenging meal.

The UNC Center of Excellence for Eating Disorders is so thankful for the generous support from the UNC Health Care Volunteer Association. With their funding, we are able to provide these monthly meals at no-cost to patients and their families. We know that attending hospital-based eating disorder treatment can result in stress or financial burdens for families, and are so happy we can cover the cost of this critical meal support program.

If you’d like to learn more about the Multi-Family Meal Program, we invite you to contact Kate Cardoza, MSW, LCSW or Rachel Finholt, MSW, LCSW at kcardoza@unch.unc.edu or rfinholt@unch.unc.edu .

By: Kate Cardoza and Rachel Finholt

Walking for Life, Hope, and Each Other

This past Saturday, I attended the third annual Raleigh National Eating Disorders Association (NEDA) walk. The day brought the community together to raise eating disorders awareness and funds for research. Altogether, Katie Ringley (the event director) and her team doubled their fundraising goal, raising over $12,000 for eating disorders research. People from all over North Carolina came to be a part of the incredible event and share their stories of hope and recovery. As you can see, there was a lot to celebrate, and celebrate people did.

In total, 122 registrants attended the event, all with the common goal of celebrating life. Some celebrated the lives of loved ones they lost from eating disorders. Others celebrated their own path to recovery, whether they had just begun their journey or were months or years into a life free of eating disorders. Additionally, family members and friends cheered on their loved ones, walking in support of their son, daughter, sister, father, or friend who once struggled or continues to struggle with an eating disorder. These awe-inspiring men and women shared their stories, embraced each other, and celebrated. Together, under the beautiful blue sky, they walked for life, hope, and each other.

This was my first NEDA walk and it will certainly not be my last. I was truly moved by these brave individuals and the people in their corner. The sense of camaraderie, love, and hope was palpable. Each person had their own unique story, but the message was clear: Life without an eating disorder is possible. I am thankful to Katie and her team for allowing me to represent our center at the event. They did a wonderful job making the day so successful.

To those of you I met, thank you for sharing your stories with me, and best of luck to you all.

By: Kate Nowlan