By Sophie Smith

A few weeks ago, I sent off a sample of my saliva to a medical research institute, filled with the hope that it will help other people around the world who are at risk of or are currently experiencing eating disorders. Let me explain…

What is EDGI?

The Eating Disorders Genetics Initiative (EDGI) is the world’s largest ever genetic investigation of eating disorders. It is a global study, funded by the United States National Institute of Mental Health, with branches in the US, Australia, New Zealand and Denmark. The Australian arm of EDGI is located at the QIMR Berghofer Medical Research Institute in Queensland. Read more about it here.

The study aims to identify genes that influence a person’s risk of developing an eating disorder, with the ultimate goal of translating this knowledge into improved prevention, diagnosis and treatment strategies for eating disorders. Despite being called the Eating Disorders Genetics Initiative, the study also focuses on the environmental causes of eating disorders via information gathered from participant surveys.

The EDGI study is open to all Australians over the age of 13 years old (children must be supervised by a guardian), who have currently or at any point in their lives experienced an eating disorder. The Australian branch of EDGI aims to recruit at least 3,500 participants, including a control group, by March 31, 2022. Get involved at this link: <https://edgi.org.au/about/>

Why did I participate?

Let me introduce myself. My name is Sophie, I’m 22 years old and currently a Master of Social Work student. In addition to studying, I’m an eating disorders advocate and lived experience advisor. I’ve had the opportunity to share my eating disorder experience on many occasions including in the media, through blogs, and at speaking events. I’ve also consulted on various eating disorder projects, including with InsideOut Institute for Eating Disorders. I’m super passionate about sharing my story, raising awareness around eating disorders and breaking some of the stigma associated with them.

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I developed an eating disorder (OSFED with orthorexic tendencies) when I was 15 years old. I lived with my eating disorder for 4 ½ years, through the end of high school and the start of university, before entering recovery in 2017. I’m proud to say that I’m now recovered from my eating disorder and using my experience to help inspire others.

As someone who has recovered from an eating disorder, I’m eager to help the field in any way possible. Participating in research like EDGI gives me the opportunity to use my lived experience to make a valuable contribution to field, which gives me enormous personal fulfilment. The idea that my experience (which I wouldn’t wish upon anyone!) could be used to help other people around the world, makes me feel like my recovery was worth the fight and can be used for good. Being affected by an eating disorder on an individual level, I have personal stake in this field and I genuinely want to help improve outcomes for other people.

What does the study involve?

Sending off my DNA sample to EDGI was very easy. The investigators gave me ample instruction about how to collect my sample. After completing the online survey, the sample collection kit was posted out to me. I received an email from EDGI to let me know when the kit was posted, so I knew to look out for it in my mailbox.

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Collecting the sample involved spitting some saliva into a collection tube through a funnel, which really wasn’t as unpleasant as it sounds! I filled out some details such as the date and time I collected the sample on a form in the kit, and then I was ready to post the package back to the research institute. The reply postage was already paid, so all I had to do was put everything in the postage sleeve and slip it into a post box nearby my house.

The whole process was very quick and easy. Although it felt a little weird to send off my DNA to a lab in Queensland, at the same time I knew I was making a valuable contribution to eating disorder research.

What are my hopes for the study?

I hope the study achieves its aims to uncover some of the genetic and environmental influences on the development of eating disorders. I’m particularly interested in the findings because I have an identical twin sister who didn’t have an eating disorder! Since eating disorders are complex mental illnesses caused by a combination of biological, psychological and social factors, hopefully the study is able figure out some of the pieces of the puzzle when it comes to the development of eating disorders. I also hope that EDGI is able to translate the findings into better prevention, diagnosis and treatment of eating disorders; which, if achieved, will represent significant steps towards to world free of eating disorders.

**Find out more about EDGI and get involved: **www.edgi.org.au