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"I felt good, rolling up my sleeve in the local community health centre, to donate blood."

June Alexander. (Photo by Mike Dugdale, Senior Photographer)

By JUNE ALEXANDER

I felt good, rolling up my sleeve in the local community health centre, to donate blood. This was no regular blood sample. This was for gene research and discovery. My blood was being collected as part of Australia’s contribution to the Anorexia Nervosa Genetics Initiative, a global effort to identify genes that contribute to eating disorders.

Within hours the blood sample was traveling 1700 km from my small hometown in Victoria by courier to the QIMR Berghofer Medical Research Institute(QIMR) in Brisbane. To know that I was contributing in a small way to helping researchers find a cure for anorexia nervosa was emotionally overwhelming.

Here I was, 50 years after developing anorexia nervosa, having a chance to contribute to science and help understand and find a cure for the eating disorder illness that tormented and almost took my life. It was like someone saying ‘we acknowledge you have had a real illness, and you can help us help find out why’.

I cried tears in my soul that day. Tears for myself, for the decades when I felt like a weak-minded misfit; tears for my parents who were not alive to know about this research. Tears especially for my mother, because she did not understand what happened to her younger daughter, me, at age 11. She did not understand that I had an illness in my brain. She certainly did not know that part of the reason was genetic. She did not know how to help me. She did not know the real me was suppressed by this illness; years later she did not know that the little girl she knew remained imprisoned deep inside the woman I had become. Without intending to, my family often made comments that strengthened the illness instead of me. And as the years rolled by, small misunderstandings became mountains that could not be crossed. Anorexia nervosa affects the sufferer most but affects, in some way, every member of the family. Its mantra seems to be ‘isolate and conquer’.

When I walked down the aisle at age 20 to marry George, my childhood sweetheart, anorexia went with me. I could not shake it off. It was worse than a monkey on my back. It was a black octopus, a 24/7 bully, in my brain. Eventually it destroyed my marriage.

My love of writing and love for my children had helped me survive, and eventually, in my 30s, I began to meet health professionals who understood the illness sufficiently to set me on the long road to recovery. I had felt on the periphery of life, like being lost in a dark forest and not knowing where to turn, for decades; now I was receiving help to find a way out – and regain me. At age 55, I gained my freedom from anorexia and began writing books to help others who, through no fault of their own, were suffering this illness. Helping others has been the best way to give purpose to my life experience.  In giving blood, besides tears in my soul, I felt joy and happiness thinking of my children and grand children, and children yet to come. Like sufferers of anorexia everywhere, I don’t want others to develop this illness but if they do, I want them to have access to prompt diagnosis and effective treatment.

I was excited and honoured to be invited to help chief investigator Professor Cynthia Bulik, together with Professor Tracey Wade and Professor Nick Martin, launch the ANGI research program for Australia in Brisbane in May 2013. Response to news about the research has been amazing with more than 600 Australians offering to roll up their sleeves and donate blood for research in the first 12 months. Now, we need another 600 participants.

Make your experience count

If, like me, you have suffered from anorexia nervosa, make your experience count in finding a cure and register today!  Logon to angi.qimr.edu.au or call 1800 257 179 to find out how to help in this great international effort to find a cure for anorexia. Reaching out takes a lot of courage because anorexia thrives on fear and anxiety, but I hope you will go ahead and reach out anyway – you will be so glad you did. Perhaps you know someone who has had anorexia – please let them know, too.

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The Tale of a Chocolate Fish

I have found, in reaching out, that life is full of sweet surprises. Last week there was a small, well-padded package to collect at the post office. The sender’s address: UNC Center of Excellence of Eating Disorders. I got in my car before curiosity got too much – I opened the package and pulled out a beautiful chocolate fish.

That this pretty fish travelled more than 10,000 miles, across the Pacific Ocean, from the University of North Carolina to Victoria, Australia, and arrived unscathed, in perfect chocolate-condition, was remarkable enough. But the story it carries is far more remarkable. This little fish represents the research mission that is making waves around the globe – the mission to get a total of 25,000 blood samples to find a cure for Anorexia Nervosa.

Prof. Cynthia Bulik explains:

“Typically the Order of the Chocolate Fish goes to the team member of the UNC Center of Excellence for Eating Disorders who has gone above and beyond the call of duty working toward our mission. This month, for the first time, we go not only beyond our program walls, but also across a large body of water to bestow the Order of the Chocolate Fish on writer, blogger, advocate, and friend, June Alexander. So this fish has had to swim airmail to Australia!

 “June has been an enthusiastic supporter of ANGI and Charlotte’s Helix. Her own enthusiastic participation launched our Australian site and her blog entries, interviews, and personal story have done so much to explain why genetic research in anorexia nervosa is so critically important. And she does it so much more effectively than we as scientists ever could. June is a champion of science and does whatever she can to help us do what we have to do to figure out what makes anorexia nervosa tick. She is a critical member of the ANGI team! In recognition of her dedication, energy, positivity, and contribution to science, it is my distinct pleasure to induct June Alexander into the Order of the Chocolate Fish. Congratulations June!”

You can make a difference, too. The best way to get the right message out about anorexia and other eating disorders, is for sufferers, their partners and their families to stand up and speak up, and shine the light on it.

Roll up Your Sleeve for Science

I hope you can help Australia meet our target of 1200 blood samples. There is a great feeling of excitement and accomplishment in knowing that with every test tube filled, we each are contributing in a small but vitally important way to understanding and treating anorexia.

As well as in Australia, researchers in the United States, Sweden, Denmark and the UK are collecting clinical information and blood samples from thousands of people with and without an eating disorder. If you have suffered from anorexia at any point in your life, you can help the ANGI researchers achieve this goal. Your contribution includes a brief 30-minute interview and a blood sample. It’s easy, I promise.

The bottom line is that researchers learn from sufferers and by sharing our story, by taking part in their projects, we are not only helping ourselves, we are helping others.

If you would liuke to help, log on to angi.qimr.edu.au or call 1800 257 179 to find out how to help in this great international effort to find a cure for anorexia.

June is currently studying for PhD at CQUniversity, Australia, working on how diary writing can be utilised in the treatment of eating disorders. June, who lives by the sea, balances her passion for writing and ED advocacy with love of family (four children, five grand children) and friends. www.junealexander.com

Tags: mamamia-cares , health-and-wellbeing
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