Did you know approximately 85,000 Australian adults are currently living with anorexia nervosa?

Anorexia nervosa is a serious and complex mental disease with psychiatric and physical symptoms. It is a life-impairing illness characterised by dangerously low body weight, an intense aversion to gaining weight and an inability or unwillingness to recognise the seriousness of the low body weight.

While the prevalence of anorexia nervosa is relatively low, it has one of the highest mortality rates of any psychiatric disorder, due to medical complications and suicide. Around 50 percent of those with anorexia nervosa will make a full and complete recovery, a further 30 per cent will make a partial recovery, while approximately 20 per cent will experience a chronic course of the illness.

In 2015, VIVA! partnered with QMIR Berghofer Medical Research Institute to launch the Anorexia Nervosa Genetics Initiative (ANGI), the world’s largest endeavor to find the genes behind Anorexia Nervosa.

Researchers from QIMR Berghofer recruited nearly 3,000 Australians and New Zealanders who have lived with the chronic eating disorder, to contribute their DNA to a global study of 16,992 anorexia cases. The genetic information of people with lived experience of the disorder was compared with the DNA from 55,525 controls globally.

In 2019, results from the study were published in the leading scientific journal, Nature Genetics, which identified the first eight genes associated with eating disorder anorexia nervosa.

QIMR Berghofer Senior Scientist and Head of the Institute’s Genetic Epidemiology laboratory, Professor Nicholas Martin, said it was a huge step forward in understanding the disorder.

“We’ve got the first eight genes, but we know there are hundreds more genes to find, and we can only do that by broadening the study and recruiting more participants. I am hoping that this success will encourage other Australians living with eating disorders to volunteer to help us find the responsible genes,” Professor Martin said.  

By explaining the role genetics plays in anorexia nervosa, researchers are hoping to be able to remove any remaining stigma associated with the condition, especially for patients and their families.

QIMR are expanding their research, with the aim of recruiting 100,000 anorexia nervosa cases internationally. This will allow them to search beyond anorexia nervosa to include other eating disorders such as bulimia and binge eating disorder.  

Their newest study, the Eating Disorders Genetics Initiative (EDGI), aims to identify hundreds of genes that influence a person’s risk of developing anorexia nervosa, bulimia nervosa and binge-eating disorder, to improve treatment, and ultimately, save lives.

QIMR researchers are seeking more than 3,500 Australians to volunteer for EDGI.

Volunteers for EDGI need to be aged 13 years or over* and have currently, or at any point in their lives experienced, anorexia nervosa, bulimia nervosa or binge eating disorder.

To learn more, or to register for the study:

• Visit www.edgi.org.au
• Email edgi@qimrberghofer.edu.au.

Should you suspect that you, or a loved one, may be living with an eating disorder, speak to your local healthcare practitioner without delay, or to access information and professional support call:

• Beyond Blue: 1300 224 636
• Life Line: 13 11 14
• Kids Help Line: 1800 551 800
• The Butterfly Foundation: 1800 33 4673