Clinical nutritionist, Lexi, 36, Brisbane, began showing initial signs of an eating disorder at seven years of age. It wasn’t until she turned 14, that a teacher at her school noticed her severe decline in weight and sought professional help.
She accompanied Lexi to a GP, who immediately referred her to a psychiatrist, which led to a diagnosis of anorexia nervosa.
Involving physiological and physical symptoms,1,2 anorexia nervosa is a serious and complex illness marked by symptoms such as extreme food restriction, and significant, and often dangerous, weight loss.3
Lexi’s ardous, 18-year-long journey to recovery from this devastating illness have involved multiple relapses, including more than 25 hospitalisations.
Today, Lexi is a strong advocate for reducing the stigma surrounding eating disorders. She aims to heighten community awareness of, and ignite conversations about eating disorders, and their indiscriminate nature.
Lexi has chosen to participate in the Eating Disorders Genetics Initiative 2 (EDGI2) study – the world’s largest genetic investigation of eating disorders ever performed, that aims to identify the hundreds of genes that influence a person’s risk of developing the complex illnesses of anorexia nervosa, bulimia nervosa, binge-eating disorder and Avoidant Restrictive Food Intake Disorder (ARFID), to improve treatment, and ultimately, save lives.
EDGI2 follows the ground-breaking advances made in the initial EDGI investigation and collaborative Anorexia Nervosa Genetics Initiative (ANGI), in which researchers, including the EDGI team, identified the first eight regions of the genome for anorexia nervosa that implicate both psychiatric and metabolic causes for the condition.
This was a total surprise and a finding that urgently needs replication and expansion to fully understand the pathways that lead to this debilitating condition – hence the need for a much larger sample size and participants who have experienced ALL eating disorders, which is the aim of the EDGI2.
This is Lexi’s story.
At seven years of age Lexi was teased by older children about her weight – something which to this day, she believes played a role in her development of a potentially devastating eating disorder.
Seven years later, Lexi was diagnosed with anorexia nervosa. At 17 years of age, she was admitted to hospital for the first time after being diagnosed.
“There were many occasions when my weight was so low, I was unable to physically walk.
“I couldn’t complete high school. I had to leave in year 12 because my illness had completely overtaken my life. Ongoing hospitalisations and periods of bed rest meant I was unable to socialise with friends, hold down a job, finish school, or go to university,” said Lexi.
“Other members of my family have experienced a similar predisposition, struggling with dieting and their relationship with food,” said Lexi.
Lexi is excited to be contributing to the Eating Disorders Genetics Initiative 2 (EDGI2) –
the world’s largest genetic investigation of eating disorders ever performed, that aims to identify the hundreds of genes that influence a person’s risk of developing the complex illnesses of anorexia nervosa, bulimia nervosa, binge-eating disorder and Avoidant Restrictive Food Intake Disorder (ARFID), to improve treatment, and ultimately, save lives.
“I believe there’s a strong biochemical and genetic aspect to eating disorders that is currently undermined and under-acknowledged. Although I experienced bullying as a child related to my weight, I feel my genes may have contributed to my development of anorexia nervosa.
“Many people often ask those who are living with anorexia nervosa why they can’t just eat. Hopefully this study and further research will serve to provide much-needed answers to this question,” Lexi said.
To volunteer for, or learn more about the Eating Disorders Genetics Initiative 2, head to edgi2.org.au or email edgi2@qimrb.edu.au.
Should you suspect you, or a loved one, may be living with an eating disorder, speak to your local healthcare practitioner without delay, or head to insideoutinstitute.org.au to complete their online screener and assessment, and to access more information and professional support.
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
References
1. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. Fifth ed 2013.
2. Eating Disorders Victoria. Classifying Eating Disorders 2024 [Available from: https://eatingdisorders.org.au/eating-disorders/what-is-an-eating-disorder/classifying-eating-disorders/].
3. Walsh BT, Hagan KE, Lockwood C. A systematic review comparing atypical anorexia nervosa and anorexia nervosa. Int J Eat Disord. 2023;56(4):798-820.