Scientists are calling for Kiwi anorexia nervosa sufferers to enrol in the world's largest and most rigorous genetic investigation yet into the devastating illness.
The call coincides with the release of new research revealing strong genetic links between anorexia nervosa and suicide attempts, with suicide implicated in a staggering 20 per cent of anorexia-related deaths - the highest death rate of any psychiatric disorder.
The groundbreaking new study, Anorexia Nervosa Genetics Initiative (ANGI), aims to identify genes involved in causing the serious and potentially life-threatening illness, which affects around 21,000 New Zealanders.
"We're seeking volunteers to shed light on the genes that predispose people to anorexia nervosa, which we know has a strong, but as yet unspecified, genetic predisposition," said global study lead principal investigator, Dr Cynthia Bulik.
Anorexia nervosa is characterised by an obsessive desire to lose weight.
While it is more common among adolescent girls, affecting four in every 100, Dr Bulik says there is a "damaging myth" that it doesn't affect anyone else.
Some of the most serious forms of the illness occur in adults aged 25 to 45 years, across all age groups, socio-economic and cultural backgrounds, including young boys.
Christchurch mother-of-three Lucy watched adolescent son Fin battle the potentially-deadly illness for three years.
Her healthy 14-year-old teenager started an exercise and weight loss regime to "fit in" with peers.
However, it soon spiralled out of control, leading to an anorexia nervosa diagnosis.
Several arduous hospitalisations later, Fin is now in recovery. "Having anorexia nervosa is like being a puppet on a string," said Fin, who is now aged 17.
"You do whatever it says. It's like being possessed without knowing that you are."
For decades, studies have shown a strong genetic link for anorexia nervosa, major depressive disorder and suicide attempts.
But scientists have yet been unable to pinpoint particular genes or determine where the genetic link among and between each lies.
Discovering a genetic explanation for their illness can be "validating", Dr Bulik said.
"There is a horrible misperception that this is somehow a choice - no one would choose to have an illness like anorexia nervosa," said Dr Bulik. "Anorexia nervosa is a treacherous biological trap that patients have to fight hard to escape from."
A total of 180 New Zealanders have already provided blood samples for the study.
ANGI study investigator, clinical psychologist Dr Jenny Jordan of University of Otago, Christchurch, says another 220 volunteers are needed before the study's July deadline.
Researchers say it will help identify and discover genes that predispose people to eating disorders and improve treatment outcomes.
ANGI is being conducted in four centres worldwide, including a combined New Zealand and Australian site, US, Denmark and Sweden. The results are expected to be published by the end of next year.
'I would rather have died than continue to suffer'
Samantha was a happy, bright young student with a passion for music. But as she approached adolescence, it all started to change. She started eating less. She became highly nervous, introverted, disinterested in her studies. Friends were blocked out.
After seeking help from her GP and school counsellor, both professionals grew increasingly concerned for Samantha's welfare.
For Samantha, her illness became so severe that she no longer wished to live. "I was so consumed by the illness, that I would rather have died than continue to suffer," she says.
"It was very scary because it just wasn't me. It was very hard to communicate. It was when I finally opened up about how low I was feeling that people started to take action."
Samantha was subsequently admitted to the youth ward of the Princess Margaret Hospital, Christchurch, and then transferred to the eating disorder wing.
She then received the specialist help and treatment required to set her on the road to recovery.
Now, the 18-year-old Christchurch graphic design student has signed up to the ANGI study aimed at gaining a greater understanding of anorexia nervosa and ultimately improving treatments.
"It brings relief to know people are researching it. Improving our understanding of the genetics associated with anorexia nervosa would be so helpful," Samantha said.
"Being able to pre-warn those who are predisposed genetically to anorexia nervosa would prove so advantageous to improving the lives of future generations."
How to participate in the anorexia nervosa global study
• Volunteers can be male or female aged 14 and above (those under 18 require parental or guardian consent).
• You must currently have anorexia nervosa or have had it at some stage in your life.
• Volunteers to complete a confidential 10-minute online survey and provide a small blood sample.
• Contact: ANGI NZ on 03 372 0400 or email firstname.lastname@example.org
• If you or a loved one is currently living with anorexia nervosa, Eating Disorders Association of NZ (EDANZ) offers support via phone (0800 2 EDANZ)
• To find out more visit: www.angi.nz