Seven years ago Helen Missen noticed that her 15-year-old daughter Jenny appeared to be struggling with her food.
She had just recovered from a virus, which had left her unable to eat for a few days, and observed how she had lost weight.
When Helen asked Jenny why she was not eating much for dinner, her daughter replied that she had eaten her main meal at school.
“Initially, I thought it was what all teenage girls go through, worrying about how they look, but quite quickly I noticed something was wrong,” Helen says.
Helen took Jenny – not her real name – to see her GP under the pretence that she was having her chilblains looked at. She was diagnosed with anorexia nervosa, sparking a traumatic two-year road to recovery.
“Anorexia literally landed, imploded our lives and changed the course of them forever,” says Helen, who lives in Llanrhaeadr-ym-Mochnant, near Oswestry.
Jenny, who is now 22 and at university, is one of the lucky ones. With the help of a supportive family, she has been able to make a recovery, and has a bright future ahead of her.
But for many others, the journey is not so smooth. An estimated 1.6 million people in the UK have some form of eating disorder – and 10 per cent of them will die as a result of their illness.
And now, in an effort to help others who are suffering from the illness, Helen is raising money for research which could have a dramatic change in how the condition is treated in years to come.
Charlotte’s Helix is a project to collect 1,000 blood or saliva samples from people in the UK as part of international research into the genetic causes of anorexia.
The project is dedicated to the memory of Helen’s friend, Charlotte Bevan, who died from breast cancer in 2013.
To carry out the research, Helen needs to raise £100,000 for the samples to be analysed, and as part of her fundraising drive she has organised a Burn’s Night celebration at Shrewsbury’s Albrighton Hall Hotel and Spa on February 6.
Charlotte’s Helix forms part of the multinational AN25K programme, which Helen says is the largest and most rigorous genetic investigation of a ever to be conducted.
“It will help to detect the genetic variation which contributes to this illness and long-term it will aid understanding and provide effective treatments,” she says.
Initially the UK had been left out of the scheme but Charlotte, whose daughter had also suffered from anorexia, was determined that Britain should take part.
Helen adds: “Charlotte was furious the UK hadn’t been included in the study so set about doing something about it and launched Charlotte’s Helix, which is now part of the international collaboration, bringing the study to the UK.
“One of her final requests was for a few of her friends to continue the project. So far the project has collected about 300 samples and raised £35,000 through donations and fundraising events.”
The project has also been backed by MPs Dominic Raab and Caroline Nokes, who have donated their own DNA samples.
But Helen, who met Charlotte through the Families Empowered and Supporting Treatment of Eating Disorders (Feast) organisation, says the project is about more than simply analysing blood samples.
“In Charlotte’s own words it’s a way to bring eating disorders into the consciousness of friends who live in a world untouched by mental health problems,” she says.
Helen is hoping that Prime Minister David Cameron’s recent pledge that mental health care should be given equal priority with physical illnesses will signal a fresh approach to conditions such as anorexia. “We were lucky in that we had a really good GP,” says Helen.
“We needed help very quickly, those first six months are so important. We were very fortunate that Jenny never became dangerously thin.”
Helen says that, like many parents, she initially blamed herself but now realises that eating disorders are an illness, and no more a choice on the part of the sufferer than a broken arm or leg.
“Parents are not to blame; anorexia nervosa and most eating disorders are mental illnesses, with genetic influences and self-esteem issues.
“Whilst there is not a known cause it’s a bit like an onion skin, peeling back the layers trying to decipher why.”
And she says while it is a condition which predominantly affects young women and teenage girls, it is by no means restricted to these categories, and people of all ages and both sexes can suffer.
Helen hopes that one day the medical profession will know enough about the condition to prevent sufferers and their families suffering in the way that they do today. And that the research being carried out by Charlotte’s Helix will play a major role in achieving that aim.
She says: “Jenny is in recovery and fighting hard but there is still the fear that she may slip back into that deep dark hole and that is why I’m determined to keep fighting for greater awareness.
“Seven years ago we knew little about the illness let alone that it was a biologically-based brain disorder with genetic implications. Opinions on the illness are changing but much more needs to be done to understand why some people are more predisposed to anorexia than others.”
- Tickets for the Burns Night party cost £50 each and are available by contacting Helen Missen by email at firstname.lastname@example.org. For further information on the Charlottes Helix Project visit www.charlotteshelix.net and for more information on Feast visit www.feast-ed.org