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, Australia, by courier to the QIMR Berghofer Medical Research Institute(QIMR) in Brisbane, Queensland. 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.
The Pain of Not Knowing
I cried tears in my soul that day. Tears for myself, for the decades when I felt a misfit, and misunderstood; 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; she did not know that the little girl she knew but had disappeared was imprisoned deep inside, crying and trying to get out. So difficult, without a guide to help her, or me. As the years rolled by, misunderstandings became mountains that could not be crossed. I became alienated from my mother and father and my sister. Anorexia Nervosa affects the sufferer most but affects, in some way, every member of the family.
It affected my marriage, too. When I walked down the aisle at age 20 to marry George, my childhood sweetheart, Anorexia Nervosa 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.
Finding a Way to Make Life Experience Count
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 lost in a dark forest for decades; now I was receiving help to find a way out – and regain me. At age 55, I gained my freedom from Anorexia Nervosa 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 make my life, and my suffering and loss, count.
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. We need another 600 participants – you could say, that’s a drop in the ocean, but every drop counts in the search for a cure for Anorexia.
If, like me, you have suffered from Anorexia Nervosa, make your experience count in finding a cure and register today! Follow the links in this article to find how to help this great international effort to find a cure for anorexia. Perhaps you know someone who has had Anorexia – please let them know, too.
The Tale of a Chocolate Fish
Last week there was a 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 small, well-padded 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 – mission to get 25,000 blood samples (Australia’s quota is 1200) 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!”
Roll up Your Sleeve for Science
I hope you can help Prof. Bulik and her team gather 25,000 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.
The response to ANGI over the past year has been truly amazing. Researchers in the United States, Sweden, Australia, and 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.