My Christmas wish: Freedom from eating disorders

Prof. Nick Martin Queensland Institute Medical Research, Prof. Cindy Bulik University North-Carolina and chief investigator and me, June, the survivor advocate. May 2013

ANGI gives hope in understanding genetic links in Anorexia Nervosa

By June Alexander

“Grandma, you are not growing old, you are maturing.” My eldest grandson, 11, is a kind and insightful lad. When we deduct the 44 years I spent incarcerated with anorexia nervosa (AN), I become 23. Such an age is a delightful place to be!

Heavy black cloak

The darkness and loneliness experienced when I developed anorexia at age 11, and was deprived of normal development from childhood to adulthood, makes today’s freedom all the more vivid, lucent and precious. The depression and despair that swooped in and enveloped me in a heavy black cloak as each Christmas approached is gone, gone, gone. However, I cannot forget the annual dread felt as the surrounding bright and bubbly festive cheer clashed inexorably with inner anguish and self-loathing. Reality hit hard. I was notching up another year in the eating disorder prison; surviving, but not living as ‘true me’; yet another year lost. Could I find a way out? I had to believe I could. I’m glad I persisted, and did not give up.

‘What have you learnt this time?’

Since breaking free in 2006, life has been magical, learning about who I am without my illness. Doctors, children and friends have been patient during this personal metamorphism. They continue to encourage me to give myself permission to experiment, make mistakes and learn from them; to explore and discover what is right for me in establishing my identity.

My children’s favorite saying, when an experience with someone or something does not work out, is “Well, Mom, and what have you learnt this time?” In many ways, I am the child and they are the adults, they are my caregivers, giving guidance, and my grandchildren are my greatest inspiration. Through a process of learning to listen to my true self and make decisions in the best interests of my true self, self-growth continues to blossom. Life is more beautiful than I ever dared to dream during those decades with anorexia.  Free to laugh, love, self-care, be childlike and have fun.

ANGI provides hope

If you are feeling stuck in the clutches of AN right now, I encourage you to feel very hopeful that things will improve for you in the coming year. Every year, we have more reason to be hopeful because our wonderful scientists are well on the way to discovering the cause of this illness and, when we know the cause, we can develop improved treatments. I am particularly excited about the investigative work of Professor Cynthia Bulik and her team in exploring the possibility of genetic links of the Anorexia Nervosa Genetics Initiative (ANGI).

Anorexia nervosa is a severe psychiatric disorder with high mortality rates. While its aetiology or cause is poorly understood, there is evidence of a significant genetic component. ANGI is an international collaboration which aims to understand the genetic basis of the disorder.

As a mother and grandmother, as well as someone who has experienced the illness, I am intensely interested in, and supportive of, this research.

Early findings

I felt honored to assist in the launch of the call for donor participants in 2013 and since then many of you have bravely and proudly joined me in responding to this call by providing a DNA sample in the form of a blood sample for genetic analysis.

Overall, in the Australian and New Zealand arm of the study, almost 4000 participants met the lifetime anorexia nervosa case criteria by using a variety of conventional and social media recruitment methods. An amazing effort, Australians and New Zealanders! This study assembled the largest community sample of people with lifetime AN in Australia and New Zealand to date.

Important early findings reveal that the proportion of people with AN currently receiving medical care, and the most common sources of treatment accessed, indicates the importance of training for general practitioners and dietitians in treating anorexia nervosa.

Analysis of genetic codes

Professor Nick Martin, senior scientist at QIMR Berghofer Medical Research Institute, Brisbane, Australia, provides the following update on Australia’s participation in the ANGI research (click below for links to ANGI’s progress in the US, Sweden, UK and Australia):

Professor Nick Martin writes:

Sample collection is now finalised across all four collection sites – Australia/NZ, Denmark, Sweden and the USA. Altogether, over 13,000 participants completed the online survey and provided a DNA sample.

DNA has been extracted from blood samples donated from ANGI Australia participants. This DNA has then been sent to the Broad Institute at Harvard University for genotyping, in turn providing researchers with a read out of each participant’s genetic code. This large dataset is now being cleaned by ANGI researchers in Australia and will soon be analysed. The first analysis to be undertaken will be to compare those with Anorexia Nervosa against those without (controls) to find the genes specific to each group. We expect the results of this analysis to be available by the end of 2018.

Our laboratory has compiled a publication detailing the data collection procedure.  You will find a link to this publication here.

As you can see, we are one step closer to understanding the relationship between genes and Anorexia Nervosa. We will keep you updated as the research progresses and any additional research opportunities that arise. Please also visit http://uncexchanges.org/ every once in a while as ANGI updates will also be published here.

Once again, we are very grateful for your support.

Professor Cynthia Bulik writes:

Our analysts and collaborators are working furiously to complete the analyses of all of all of the data that have been generated from ANGI. You can read about the entire study (all sites) here. This is a pre-print of the study (making sure everyone can read it without being behind journal paywalls). But there are likely to be changes after it gets reviewed and accepted into a journal. As you can see, this was an enormous undertaking but scores of dedicated professionals. We are all excited to share the results once they are finalized. Importantly, a study we published last year in the American Journal of Psychiatry gave us a first glimpse into the underlying genetic biology of anorexia nervosa. That paper, which identified the first genetic region that influences anorexia nervosa also revealed that the illness has both metabolic and psychiatric components. This encourages us to look deeper into why and how people with anorexia can lose so much weight and why it is so hard to keep that weight on even after successful treatment.

How to Stay Informed

In the US: ANGI UNC School of Medicine

In Sweden: ANGI Sweden

In Australia: ANGI Australia

In the UK: Charlotte’s Helix Project

Thank you

Thank you to everyone who has contributed to this first year of Dear Diary. Many topics pertaining to the eating disorder field have been covered and explored and I hope you have found the posts helpful and insightful. I wish readers a happy and safe festive season. This column will return in the first week of 2018 with an outline of exciting goals and themes for the coming year.

Remember, there is hope for healing at every age. Never, ever give up.

June Alexander

About June Alexander

I have written nine books about eating disorders since my recovery (my “reconnection with true self”) from anorexia nervosa and other long term mental health challenges in 2006. In 2017, I graduated as a Doctor of Philosophy (Creative Writing). My contribution to the eating disorder field was recognised at the 2016 Academy for Eating Disorders International Conference in San Francisco where I was awarded the Meehan/Hartley Award for Public Service and Advocacy. I am currently a co-chair of the NEDC Steering Committee Evidence of Experience Group, a foundation steering committee member of the annual World Eating Disorders Action Day, and an Advisory Panel member for F.E.A.S.T.

All articles by June Alexander

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