Roll up your sleeve for science! I can hardly wait

By: 
June Alexander

Calling all sufferers of anorexia – help researchers find a cure!

If you have suffered anorexia nervosa at any point in your life, researchers want to hear from you. Why? Because you are in the hot seat to help find find the cause and a cure.

I developed anorexia nervosa at age 11, way back in 1962. Today, I am a grandmother of five children, the eldest of whom is aged six years. I am rolling up my sleeve for them and their future children. Why? Researchers have discovered that genes play a role in risk for anorexia nervosa, and I will do anything that can help prevent this illness happening to my descendants – and all children, everywhere.

Researchers in the United States, Australia, Sweden and Denmark are collecting clinical information and DNA samples from more than 8,000 people – women and girls - who have had or currently have anorexia nervosa.

Called the Anorexia Nervosa Genetics Initiative (ANGI), this global effort aims to identify genes that contribute to eating disorders. The study aims to transform knowledge about the causes of anorexia nervosa and work toward a cure.

Professor Cynthia Bulik, at the University of North Carolina (UNC), is lead investigator. Australian investigators include Professor Nick Martin from the Queensland Institute of Medical Research (QIMR) at Royal Brisbane Hospital and Professor Tracey Wade, Flinders University (South Australia).

What is ANGI?
This global research aims to identify which genes are involved in the development of anorexia nervosa. ANGI wants to hear from people with current or past anorexia nervosa as well as people with no history of an eating disorder to provide clinical information and blood samples.

Am I Eligible to Help?
If you currently have anorexia nervosa, or if you had it two years ago, or even 30 years ago, you are eligible to help!

What to Expect
The process is in two stages:

  • Firstly, you are invited to complete a quick, 30-minute questionnaire (online, on paper, or by telephone) about your eating habits.
  • Secondly, if eligible, you are invited to provide a DNA sample.

Providing a sample is a simple blood draw.

I’ve filled in the online form and am ready to roll up my sleeve for science. I can hardly wait. Can you?
Let’s do it!

How good it feels to know we can give science a shot in the arm, and help to ease the suffering of others!
Girls under 18 can take part with parental consent, but it is easier to get involved if you are aged over 18.
If, like me, your anorexia transitioned into bulimia nervosa, you remain eligible to take part.

The online survey can be completed and submitted from the comfort of home.

Those of us considered eligible will receive instructions for a blood draw at no cost to us. This is all we need to do to help our scientists stamp out ‘ED’.

Genes and Environment
Taking part in this research is a great opportunity for sufferers to help researchers get the message out that anorexia nervosa is not an illness of choice; it is a serious medical condition. To do this, researchers need to find the cause of anorexia. From there, they can find a cure. The DNA samples that we provide will be compared with a control group to pinpoint genetic differences.

We know that both genes and environment play a role, but which genes? Which ones are related to anorexia? Why are some people more vulnerable or susceptible than others? What makes the difference? Why does one person in the family get anorexia and others don’t? What interaction takes place between genes and environment to trigger anorexia?

By taking part in the Anorexia Nervosa Genetics Initiative we will help answer these questions.

Am I Eligible to Participate?
If you have ever suffered from anorexia nervosa, here’s how to make contact for more information or to volunteer:

USA*:
Anorexia Nervosa Genetics Initiative (ANGI)
University of North Carolina at Chapel Hill
Phone: 919.966.3065
Website: www.unceatingdisorders.org/angi
Email: angi@unc.edu
Twitter: @uncceed
Site Coordinator: Jessica Baker
Email:  jessica_baker@med.unc.edu

Within the USA, if you can't travel to UNC, a sample kit will be mailed to you with pre-paid return postage. Help will be provided to have your blood drawn at your local laboratory at no cost to you. To say thanks, the UNC will send you a $25 Amazon gift certificate. Why? This research cannot take place without you. Call today!

Australia:
Website: http://genepi.qimr.edu.au/
Site Coordinator: Richard Parker
Email: Richard.parker@qimr.edu.au

Why Understanding our Genes is Important:

  • Professor Bulik explains why we need to know more about genetic risk factors in development of eating disorders Eating disorders are generally rooted in genetic vulnerabilities that lie in wait until triggered by common life stresses—going away to school, turbulent relationships, an illness.
  • Genetic research has revolutionized thinking - that tended to blame the environment and dysfunctional families for eating disorders - by recognizing a strong biological component. Researchers are starting to identify genes that influence risk.
  • Between 50 and 80 per cent of a person's risk of an eating disorder is due to genetic factors.
  • Several personality traits and behaviors that may be influenced by those genes are associated with both anorexia and bulimia. As a result, those traits and behaviors are generally regarded as a red flag that may indicate risk.
  • Childhood anxiety and a tendency toward perfectionism are more prevalent in people with eating disorders, for example, as is obsessive-compulsive disorder (OCD), a condition marked by obsessive thoughts, a need for control, and repetitive actions like hand-washing.
  • Another risk factor specific to anorexia is an ironic reaction to limiting food intake. When most people go on a diet and watch their food intake, they tend to become moody, anxious, and grumpy. But when people predisposed to anorexia are in negative energy balance (expending more energy than they are eating), it makes them less anxious and a lot more content.
  • In a culture that worships body size, however, the biggest risk factor for an eating disorder is dieting. This is why Professor Bulik says ‘genes load the gun, but the environment pulls the trigger’. Someone might be genetically predisposed to anorexia, but if they never go on that first extreme diet, they'll never develop the disorder. For both anorexia and bulimia, the diet is step one.
  • Once on a diet, those with a predisposition toward anorexia find that limiting food intake is a positive experience for them (on one level) and keep on restricting. Those with a predisposition toward bulimia find that when they restrict their eating, they'll binge until they feel they will burst. Then there's a good chance they'll purge.
  • Over a lifespan, people can move from one disorder to another, to no disorder at all, then relapse and end up back where they started. Or they can move from a full-blown disorder to a partial disorder with few symptoms.
  • To date, efforts have not been very effective in treating or preventing eating disorders. Recovery generally takes five or six years. It may not happen at all. Importantly: the faster you get help the faster and more likely you are to beat the disorder.

 

About the Author: At age 11, June developed anorexia nervosa, a severe psychiatric illness that challenged and shaped her life. A love of words became a tool for survival and June became a senior writer, editor and newspaper columnist. Since gaining freedom from her illness in 2006, June has applied her experience of living with an eating disorder in disseminating evidence-based research in words that mainstream readers can understand. Her books include: My Kid Is Back – Empowering Parents to Beat Anorexia Nervosa; memoir A Girl Called Tim – Escape from an Eating Disorder Hell; and A Collaborative Approach to Eating Disorders; Anorexia Nervosa – a Recovery Guide for Sufferers, Friends and Families; A Clinician’s Guide to Binge Eating Disorder; and ED says U said – Eating Disorder Translator. June speaks internationally on the theme ‘Hope at Every Age’ and is a member of national and international mental health and advocacy organisations. Her website and blog offers support to people with eating disorders and their families. www.junealexander.com

 

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