New research: Is Anorexia in our genes?

A new campaign which suggests that Anorexia is in our genes has been launched in the UK with collaboration of the Charlotte Helix programme and eating disorder charity Beat.

The international campaign was launched by Professor Cynthia Bulik whose aim is to collect 25,000 DNA samples from across the globe in order to ‘crack the code’ of genetics. Professor Bulik believes that Anorexia is genetic.

Susan Ringwood CEO of charity Beat said: “Each sample is £100 there is a biological genetic component, a hard wired factor in the gene, anorexia is not all about what influences the media make.So this biology is a huge starting point.

“The campaign has had a few donations so far and the online community is very active as are people who no Charlotte and who want to carry on her legacy.

“While the overall research plan is funded, funding for actually taking the samples is not provided and donations are being sought through the Charlotte Helix project.

“The research is several years away from that point. There is no gene yet identified. This phase of the research will hope to ‘spot’ some places in our genome where further research can be focussed that could add to our understanding.”

This is exciting news for anyone who has suffered from this, or has a family member with the condition, it is set to give more answers into why people develop anorexia. The research will target mostly people who have suffered from the condition and will determine if a so called ‘anorexia’ gene is found.

Priya Tew, Dietitian and Nutritionist has said that she has seen cases where numerous family members have been affected by eating disorders.

“It’s often an environmental effect where the mums attitude to food and body image is passed onto the daughter. If the mum is particular in the way she eats and in her comments the daughter can pick up on these.

“For example only eating low calorie foods and exercising to burn off calories. Children learn their food behaviours mainly from their parents.”

Even though Priya has seen cases like this she feels it’s not genetics that cause these conditions.

“I wouldn’t say it is a genetic effect but an environmental one, people can be triggered by many things, the media, abuse, comments from loved ones, their friends dieting, losing weight for an event and then unable to stop, being pushed by parents to achieve at school and be the best, bullying.”

Currently anorexia is treated as a mental illness, which I myself believe is a huge part of the condition, in a lot of cases the mind takes over and the person is consumed by the mind telling them that they are not the right shape or size. But this research would show that genetics play a huge part in this process. One of the main questions however is do the NHS do enough to help anorexia sufferers, or are they left on the shelf?

Priya thinks that mental health is an area which does not receive enough focus: “ I think mental health in general is an area that does not have enough focus and resources.

“Eating disorders are often thought to be easily fixed or not significant and are not easy to understand to the outsider/general public. More resources are definitely needed.”

The topic of genetics is a confusing one, add in that anorexia may be caused by genetics and it’s even more complicated. In trying to best understand the research and how it could help people with anorexia, I spoke to DR. Cynthia Bulik who is heading the research.


TA- Myself, Terri-Ann Williams

CB: Dr Cynthia Bulik

TA: Has somebody already been identified to have this gene, if not then what does the gene look like, how did you come across this finding?

CB:  So there will never be ONE gene for anorexia  nervosa. What we are actually doing is a scan of the entire genome—comparing cases and controls to see where the genome differs. There have been a few smaller studies like this, but the key to these sort of studies is sample size. There have been amazing strides in other areas and we are starting to see wonderful results in other psychiatric disorders (like schizophrenia and autism). Eating disorders are a little behind which is why Charlotte’s Helix came to be in the first place. Charlotte has taken up my charge for the field to get 25,000 cases in 4 years.


TA: How long will it take before there is significant progress with the research?

CB:The slow part of this research is the collection of samples. Once we have the DNA samples and clinical information in hand, the actual genotyping is pretty fast (provided the funds are there to genotype). So, depending on how fast people volunteer, we could have results a year after we reach our mark.


TA: If these genes are found, do you have any idea of what sort of treatment will be available, or is this dependent on what the research finds?

CB: The bottom line is that we know precious little about the underlying biology of anorexia nervosa. Studies help identify genes and pathways that may contribute to risk. Once we can identify those pathways, we have a window into the biology. That window will allow us to develop an understanding of how those genes influence risk for the disorder and hopefully develop treatments that target the underlying biology. At this point in time, we have no medications that are effective for the treatment of anorexia nervosa.


TA: In your experience have you seen many cases where a parent and a child or relative have both suffered from anorexia nervosa?

CB: Definitely. We know that eating disorders run in families and can cross generational lines. Twin studies have verified that the reason they run in families is due primarily to genetic factors. But every with anorexia nervosa doesn’t have a relative with the disorder. We also see quite a bit of depression and anxiety disorders in family members of people with anorexia. Sometimes, anorexia nervosa just happens, with no family history at all.


TA: Has anybody agreed to be tested for the gene? Have they had the condition in their family?

CB: There will never be a single gene test for anorexia nervosa. It will be a collection of perhaps hundreds of genes that act together to increase risk. Given that we know that environment plays a role, the final answer will most likely be a “risk profile” that includes both genetic and environmental information.


Even with all the research in place for genetics, it seems that it will be a while before the research amounts to anything. Which for people with the condition is an extremely long wait. Anorexia can put strain on a whole family, not just the person with the condition.

I spoke to Charlotte Bevan who is heading the campaign in the UK, and whose daughter suffered from anorexia.

“This new research has shown that it could be about brains and genetics and not just about people wanting to look thin.”

“When I was diagnosed with cancer people wanted to do something pro-active to help. So I asked people to donate their birthdays to the campaign. So rather than receiving gifts, the campaign will receive the funds it needs to do vital research.

Again the issue of the NHS and resources came up, which is clearly something many people feel extremely passionate about.

“There’s no real money going into mental health, it’s over stigmatised, and it’s become a case of people slipping through the system”.

My personal opinion is that there is too much emphasis on what the ‘perfect’ woman is. Some are described as curvy, others as slender and thin. Every woman is a ‘real’ woman in my opinion. Just because I’m curvy myself I would not describe myself as a ‘real woman’. I’m as real as someone who weighs 7 stone. We are all real women, regardless of size.

Anorexia affects both genders but predominantly females. I’d put this down to the pressure women face to look a certain way. I feel that only when this sort of behaviour stops will we truly be able to help people who suffer from eating disorders.

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