October 12th, 2015, the television news-show Aktuellt featured an interview with professor Cynthia Bulik about the ANGI-project. Bulik, who is the leading researcher in eating disorders and director of American ANGI, was interviewed at Karolinska Institutet in Stockholm.
Cynthia says that the disease anorexia nervosa has long been misunderstood, and that it is important for family members to understand the mechanisms of self-starvation.
– To suffer from anorexia is not a choice you make, it is a genetic disease. What few people know is that it is the psychiatric disorder that kills the largest number of people. More die from anorexia than from depression and schizophrenia. There are genes that load the gun, but environment that pulls the trigger.
Anorexia nervosa is a very serious type of eating disorder and those who suffer often have a distorted body image and starve themselves, sometimes to death. Aside from the medical complications arising from extreme malnutrition, suicide is the leading cause of death among patients. Many patients get health complications for life, like heart impact, organ failure and sepsis.
Social and biological causes
It was long believed that anorexia was due to socio-cultural reasons, such as family problems. Cynthia Bulik says that the disease until relatively recently has been misunderstood.
– It was believed that people opted for this disease because they want to be as slim as the models in the beauty industry. That is not true at all. Anorexia is not a choice. Thanks to twin studies, we know that anorexia is partially inheritable. So this means that 50 percent of the risk of developing the disease is due to genetic factors, which is the equivalent figure applying to other mental illnesses such as schizophrenia or bipolar disorder, says Cynthia Bulik.
Cynthia Bulik is described by medical experts in the field as the researcher with the absolute cutting edge knowledge in the world about anorexia.
The ANGI study brings together researchers in various fields and in several countries to try to investigate the disease with new eyes. They want to find out which genes make certain people at a higher risk of developing the disease than others. In Sweden, the ANGI study is lead by professor Mikael Landén.
Record-breaking research project
The ANGI study will collect blood samples from 13,000 men and women from Sweden, Denmark, USA, Australia and New Zealand who have, or have had, anorexia, and compare these with 13,000 blood samples from people who have never had the disease.
– Most of us feel miserable when we get hungry. If we miss lunch we will become acidic and irritated, and maybe get a headache. But people who are biologically prone to anorexia, they have the opposite response – their bodies respond paradoxically to hunger. They feel anxious and irritable at baseline, and when they go on that first diet, they find that the body feels calm. And that is what lures them into this prolonged starvation that is anorexia nervosa, says Cynthia Bulik in the interview.
– So far, we have no effective drugs to treat this disease, and this is because we do not yet understand the underlying biology. But this study may help us to crack the genetic code, so that we can turn these patients’ paradoxical experiences of calm when they starve themselves.
International research shows that about 1-2 per cent of girls and women between 13 and 30 suffer from the disease, and the figure is the same around the world. About 3-5 times as many suffer from other forms of eating disorders – that is about 6-10 percent overall. But the hidden statistics are large, and probably largest among boys and men, but in Sweden researchers estimate that about 100,000 girls and women aged 13-30 are suffering from some form of eating disorder, and about 15,000 boys and men. In 2014, 30 percent of all persons registered in the National Registry of Eating Disorder Treatment were under 18 years of age.
– Only one in four will completely recover from anorexia, and one in ten will die, so we have to find ways to get much better at treating this disease, Cynthia Bulik concludes.
By Ann-Sofie Lundin