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," Blue said.
At age 24, at just 5 feet, 5 inches, 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. Cynthia Bulik, director, UNC Center of Excellence for Eating Disorders, said not everyone with anorexia is so lucky.
"It has the highest mortality rate of any psychiatric disorder," Bulik said. "People with anorexia are over 50 times more likely to commit suicide than their peers who don’t have an eating disorder."
Studies show genes and environment each plays a 50/50 role in who develops it, but first degree relatives of are 11 times more likely to.
"One of the things that I like to say is that genes load the gun, but environment pulls the trigger," Bulik explained.
That's why 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," 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, email firstname.lastname@example.org or call 919-966-3065.