How research into eating disorders has changed my life

How research into eating disorders has changed my life

One thing that springs to mind when I think of researchers and scientists is their love of a good acronym. As a woman in her thirties, two acronyms in particular hold a deep meaning for me: the Anorexia Nervosa Genetics Initiative (ANGI) and the Eating Disorders Genetics Initiative (EDGI).

Anorexia Nervosa Genetics Initiative (ANGI)

DNA samples gathered from 17,000 people worldwide led to scientists identifying the first eight genetic loci associated with anorexia nervosa (AN). Announced in 2017, this global study found that the origins of AN appear to be both metabolic and psychiatric.

How did scientists make their way towards these findings? The genetic information of people with lived experiences of AN was compared to DNA from 55,525 controls of European ancestry from 17 countries across North America, Europe, and Australasia.

In its time, ANGI was the largest and most rigorous genetic investigation of eating disorders conducted. Principal investigator and Professor at the University of North Carolina School of Medicine in the United States and Karolinska Institutet in Sweden, Dr. Cynthia M. Bulik, was the lead investigator of ANGI.

Meanwhile, QIMR Berghofer Medical Research Institute, Brisbane, also played a vital role. Senior scientist and head of the Institute’s Genetic Epidemiology laboratory, Professor Nicholas Martin, led the data collection team in Australia. 

Eating Disorders Genetics Initiative (EDGI)

ANGI was always intended to evolve over time. Once again led by Dr. Bulik, as the name suggests, research is now opening up to other eating disorders and EDGI has overtaken ANGI as the world’s largest genetic investigation of eating disorders. Besides Australia, collaborators in the USA, New Zealand and the UK are recruiting for EDGI. Australian researchers are seeking 3,500+ volunteers with the goal of identifying hundreds of genes that influence a person’s risk of developing AN, bulimia nervosa and binge eating disorder. The aim is that this knowledge will improve treatments and ultimately, save lives. Collectively, by providing a saliva sample and filling out a questionnaire, people with lived experience of eating disorders in these countries can help to improve treatment access and interventions for future generations.

EDGI Study interview with Professor Cynthia Bulik from Brianna Guterres.

How this game-changing research has positively impacted my quality of life

I have lost count of the number of times people have told me that I chose to have an eating disorder. After all, the solution is simple, right? “Just eat.” I hear these words repeatedly in my mind, like they were said only yesterday. 

Although I have been recovered for about a decade, it is only in the past few years that I have chosen to write about and share my experience. For a long time, I thought of my anorexia as belonging to a past life. Completely separate from me. Why? Because even if I felt the need to talk about my experience (I am more a writer more than a speaker, so never felt the need to verbalize my thoughts and feelings), conversations with those around me did not end well. People love black and white thinking and answers.

“What triggered your eating disorder?”

“Why couldn’t you just eat? The answer is so simple.”

“Dieting is all most women talk about, why doesn’t everyone become sick?” 

I don’t have the answers to these questions. Furthermore, some people enjoy telling me about my eating disorder to this day… they consider themselves informed after watching a current affairs program on TV or reading a magazine. The experience of living through an eating disorder cannot be replaced by stereotypical headlines or sensational journalism.

Regardless of whether it was intentional or not, some people have made me feel my eating disorder was my fault. Moreover, because of me, that everyone around me was suffering and had to turn their world upside down to help me stay alive. I grew up with that shame and shaking it off has been very difficult.   

The ANGI and EDGI research means a lot to me because it has lifted that weight of shame off my shoulders. It helps to etch away at the stigma. I didn’t choose my eating disorder. There is a genetic component, both metabolic and psychiatric.

The shame continues to creep into my life every now and again. I don’t go out of my way to tell people about my past. While there is a long way to go in terms of education and awareness, this research empowers me to look at AN like any other illness. Would I be ashamed or afraid of telling someone I am a cancer survivor or that I have diabetes? Of course not. Therefore, there is no room in my life moving forward to feel ashamed when telling people that I had AN for a decade and that I have been in recovery for the same amount of time.