Decoding Anorexia: The Gene Search


From decades of research, we know genes influence a person's risk for anorexia. Now, there's a global effort to identify those genes that cause eating disorders; one that could save countless lives.

Allison blue doesn't keep many photos from her teenage years—but she will tell you about her struggle with anorexia. It began at 14. By 16, she dropped 30 pounds.

"Even when I was told if I kept going down that path, I didn't really have that much longer to live. It really didn't matter to me," Allison Blue told Ivanhoe.

At age 24, at just five-foot-five, her weight hit its lowest point.  She weighed 90 pounds.

Her health and heart began to fail. Then she lost her hair.

"Probably over a third of it fell out," Blue said.

That's when she finally got the help she needed. Dr. Cynthia Bulik says not everyone with anorexia is so lucky.

"It has the highest mortality rate of any psychiatric disorder," Cynthia Bulik, PhD, Director, UNC Center of Excellence for Eating Disorders, told Ivanhoe.

"People with anorexia are over 50 times more likely to commit suicide than their peers who don't have an eating disorder," Dr. Bulik said.

Studies show genes and environment each play a 50/50 role in who develops it. But first degree relatives of are eleven times more likely to.

"One of the things that I like to say is that genes load the gun, but environment pulls the trigger," Dr. Bulik explained.

That's why Dr. Bulik is leading the Anorexia Nervosa Genetics Initiative—known as ANGI . Participants complete an online questionnaire and mail in small blood samples for DNA. The goal is to identify genes responsible for anorexia nervosa and eventually to develop new treatments.

"My fantasy is that if we could get everybody in the country who's ever had anorexia nervosa to participate in ANGI, we could crack this nut," Dr. Bulik said.

A fantasy Blue would like to see come true as well.

"I would love for people to know more about it," Blue said.

The goal of the study is to gather 8,000 samples by 2015. If you are interested in participating in ANGI, please email angi@unc.edu or call 919-966-3065.

BACKGROUND: Anorexia nervosa is an eating disorder that causes people to obsess about their weight and the food they eat.  People with the condition attempt to maintain a weight that is far below normal range for their age and height.  To prevent weight gain or to continue losing weight, people with anorexia nervosa may starve themselves or exercise excessively.  It can be difficult to overcome, but with treatment patients can gain a better sense of who they are and return to healthier eating habits and reverse some of anorexia's serious complications.  (Source: http://www.mayoclinic.org/diseases-conditions/anorexia/basics/definition/con-20033002)

SIGNS:  Physical signs and symptoms include extreme weight loss, irregular heart rhythms, low blood pressure, dehydration, osteoporosis, constipation, abnormal blood counts, fatigue, insomnia, dizziness or fainting, a bluish discoloration of the fingers, hair that thins or falls out, and absence of menstruation.  Emotional and behavioral symptoms can include: social withdrawal, irritability, depressed mood, reduced interest in sex, denial of hunger, refusal to eat, afraid of gaining weight, preoccupation with food, flat mood (lack of emotion), and excessive exercise. (Source: http://www.mayoclinic.org/diseases-conditions/anorexia/basics/symptoms/con-20033002 and http://www.nami.org/Template.cfm?Section=By_Illness&template=/ContentManagement/ContentDisplay.cfm&ContentID=7409)

ANOREXIA NERVOSA GENETICS INITIATIVE:  Studies show both genes and environment play a role in the development of anorexia nervosa. First degree relatives of someone with anorexia nervosa are eleven times more likely to have anorexia than relatives of someone without anorexia.  Later research has suggested that the heritability of anorexia, or the proportion of differences in anorexia between individuals due to genetic factors, is between 28 percent and 74 percent. However, the specific genes contributing to anorexia nervosa risk are still unknown. The Anorexia Nervosa Genetics Initiative (ANGI) is the largest and most rigorous genetic investigation of eating disorders ever conducted.  Researchers in the U.S., Sweden, Australia, and Denmark are collecting clinical information and blood samples from over 8,000 people with anorexia nervosa and individuals without an eating disorder. The goal of the study is to spot these genes.  An interesting aspect of ANGI is that people have the ability to participate from anywhere in the U.S.  Researchers can mail a sample kit to the individual interested in participating and they can help arrange to have participants' blood drawn at their local lab at no cost to the participant.  The study is still enrolling subjects.  For more information on enrolling, go to: angi@unc.edu. (Source: http://uncexchanges.org/2013/05/20/unc-launches-global-effort-to-identify-genes-that-contribute-to-anorexia-nervosa/ and http://www.med.unc.edu/psych/eatingdisorders/our-research/angi)

* For More Information, Contact:


Cynthia Bulik, PhD


UNC Center of Excellence for Eating Disorders