Olympian Lisa Curry pleads for help to find genetic link in deadly disorder that claimed daughter’s life

One of the nation’s greatest swimmers is appealing to Australians to potentially save lives from a disorder that claimed her own daughter’s life.

Triple Olympian Lisa Curry is leading a national appeal for 4000 adults with lived experience of an eating disorder to join the world’s largest genetics investigation into the risk factors driving these complex illnesses.

The Eating Disorders Genetics Initiative 2 (EDGI2) aims to pinpoint the hundreds of genes influencing a person’s risk of developing anorexia nervosa, bulimia nervosa, binge-eating disorder and Avoidant Restrictive Food Intake Disorder (ARFID), to improve treatment, and save lives.

WATCH ABOVE: Lisa Curry pleads for Australians to join research study.

The mother of three is a champion of mental and physical wellness who is supporting EDGI2 due to the heartbreaking loss of her daughter Jaimi, 33, to long-term health challenges, including anorexia nervosa.

“Too little is known about eating disorders, which affect over a million Australians,” Curry said,

“Eating disorders remain among the most stigmatised mental health conditions. This stigma often prevents people from seeking help, making things worse.

“Individuals and families affected by eating disorders deserve answers, earlier intervention, and personalised treatments that work.

Curry’s appeal for study volunteers, in partnership with researchers, doctors and patients Australia-wide, coincides with the publication of an article in the Medical Journal of Australia’s Insight+, revealing how the complex interplay of genetic, environmental, and psychological factors in eating disorders has hindered effective treatment breakthroughs.

In 2023, 1.1 million Australians were living with an eating disorder, equating to one in 23 people or almost five per cent of the Australian adult population.

The prevalence of eating disorders appears to be on the rise, with a 21 per cent increase observed in Australia over 11 years.

Many factors influence eating disorders, including genetics, developmental transitions (including puberty, childbirth, and menopause), thinking styles (such as perfectionism), body dissatisfaction, and sociocultural pressures to be thin.

Mental health peer support worker and mother-of-three, Lauren, 35, from Adelaide, has battled anorexia nervosa for 14 years. She started feeling insecure about her body at just four years of age, and at 12 was finally diagnosed with the eating disorder.

“I started restricting my food, adopting an obsessive diet that cut out everything except meat. I had no carbs or bread. I found myself stepping on the scales multiple times a day. I was obsessed with my weight,” Lauren said.

“Anorexia nervosa took over every part of my life. It felt like no one truly knew me, or recognised what I was going through.”

Lauren’s first pregnancy intensified her struggle with anorexia nervosa. It wasn’t until the new mum turned 26 that she sought professional help and commenced her recovery.

Lauren suspects genetics may contribute, as her sister also suffered from an eating disorder.

“My eating disorder was triggered by many factors. That’s why it’s important we look at what role genetics plays,” she said.

According to lead Australian EDGI2 investigator, Professor Nick Martin, this new study builds on the groundbreaking progress of the original EDGI investigation, and the collaborative Anorexia Nervosa Genetics Initiative (ANGI), which identified the first eight genes linked to anorexia nervosa, highlighting both psychiatric and metabolic causes of the illness.

“This discovery was completely unexpected, and requires urgent replication and further study to fully understand the pathways leading to anorexia nervosa,” Martin said.

“That’s why a larger sample size is crucial, which is the aim of EDGI2.

“While rigorous research shows genes account for more than half the risk of eating disorders, we still lack understanding and accurate tools to predict their progression, or response to treatment.

“A larger, more diverse sample will enhance our understanding of genetic risks, vulnerabilities, and protective factors, leading to earlier, more personalised treatments, and better predictions of disease progression and future risk.

Clinical psychologist and EDGI2 Australia chief investigator Professor Sarah Maguire OAM explained eating disorders can affect people of any age, weight, size, shape, cultural background, or identity, and significantly compromise quality of life.

“They impact the individual, and their family in just about every way possible – professionally, personally, emotionally and psychologically,” she said.

“Eating disorders can also have serious medical consequences, they have a strong link to depression, anxiety, obsessive-compulsive symptoms, social isolation, and sometimes, suicide.

“Their medical complications may include cognitive impairment, heart issues, growth retardation and osteoporosis.

“The eating disorders mortality rate is significantly higher than other psychiatric conditions, mainly due to medical complications, and the rate of suicide.

“Importantly, eating disorders are treatable. Research advances like EDGI2, which enhance understanding of genetic and environmental factors, along with early detection and personalised treatment, are key to recovery and improved patient management.

Executive Director, Eating Disorders Families Australia (EDFA), and lived-experience carer Jane Rowan emphasises “eating disorders are not a choice – they are serious mental illnesses.

“However, with early intervention and a comprehensive approach that addresses the physical, psychological, and social aspects of an eating disorder, recovery is possible for everyone, regardless of severity or stage of illness,” she said.

Those interested in joining the study can sign up here.

Australian professional patient support services offering 24/7 helpline services include:

• Butterfly National Helpline: 1800 334 673
• Beyond Blue: 1300 22 4636
• LifeLine: 13 11 14
• Men’s Line Australia: 1300 78 99 78
• Kids Help Line: 1800 55 1800