Despite it being considered a 'boutique' illness, anorexia nervosa is an extremely lethal disease. Nuala Macklin reports
Anorexics tend to be very driven, perfectionist and highly productive. They are generally very nice kids who are strong willed and determined, a conference in Dublin was told last week.
Anorexia nervosa is a serious psychiatric disorder that combines pathological thoughts and behaviours about food and weight with negative emotions concerning appearances, eating and food.
US figures estimate it has a prevalence of 0.48 per cent among girls aged 15 to 19. Risk of death as a result of complications of anorexia nervosa are estimated at up to 15 per cent.
While opinions on the subject proliferate, not a lot of actual research has been conducted. This has left more questions than answers as to the cause of what is, in reality, a lethal illness. Because so many people regard anorexia as a choice or sort of 'boutique' illness - often associated with the wealthy - perception of the disorder tends to be hazy.
While dieting in itself is a choice, once it goes past a certain point, the thinking and values associated with dieting are no longer independently chosen as the vicious grip of anorexia takes over.
Because of this, most people don't realise just how extremely dangerous this illness is.
Speaking at the Mater Hospital last week, Prof James Lock of Stanford University in the US outlined the insidious nature of anorexia and said: "It generally manages to escape detection until a patient, usually an adolescent girl, reaches a critical physical and mental state of deterioration.
"We don't know the exact cause of anorexia nervosa, but it has been suggested that the disorder represents the individual's difficulty in negotiating the developmental demands of adolescence.
"The tradition of seeing anorexia as the result of family pathology is a view I would say is not as empirically supported as some people might suggest. In other words, the parents are not to blame for the illness."
He said: "Anorexics tend to be very driven, perfectionist and highly productive. They are generally very nice kids who are strong willed and determined.
"It's when they apply this strength to their dieting that it becomes very dangerous and makes them all the more difficult to treat.
"The immediate physical health symptoms of rapid weight loss and no nutrition are changes in blood pressure, hydration and heart rate. The body begins to try to conserve energy and almost go into hibernation. These are all dangerous things if they persist. The heart rate can slow to such a rate that the electrical impulses in the heart stop knowing when to trigger the next beat. This can result in a cardiac event or heat attack."
Prof Lock warned of the lack of proper nutrition and the serious implications for girls. "At a time when they should be growing bone density, the mineralisation process stops. This can be very difficult to recover from.
"Psychologically, the anorexic's personality changes as she starts to become obsessed with the process. As she begins to withdraw socially from friends and the world, she will feel more socially isolated and depressed. When people around her begin to worry, she will become defensive and irritable in an effort to protect her strategy, which is basically not to eat.
"This is often the point when the parents begin to realise there is something wrong with their child."
Traditionally, anorexics have been treated as inpatients for lengthy periods which can sometimes result in only short-term improvement. In addition, this method is extremely costly and very disruptive of the adolescent's life.
A 60-day stay in Our Lady's Hospital for Sick Children in Crumlin for an anorexic patient costs a minimum of €24,000 for nursing alone.
This does not include the cost of a dietician or psychological and medical treatment.
The Family Based Therapy (FBT) programme which the professor introduced to a team of medical professionals in Dublin, was originally developed by Christopher Dare at the Maudsley Hospital in London .
It is a radical and comparatively low-cost approach. It requires the absolute minimum hospitalisation for the patient and incorporates parents and siblings as resources in the treatment of the patient. Prof Lock reports an 80 per cent overall recovery rate.
"This is very good in terms of psychological and medical treatment. If we obtained that success rate with anti-depressant medication, it would be really huge," he said. "The parent or parents seem to like getting involved in the treatment.
"Siblings can be a great resource and can help their brother or sister with the recovery process in very practical and powerful ways. They can bring a degree of normality into the life of the recovering anorexic who might be finding it difficult to re-connect with friends and society," Prof Lock said.
"They can often feel a level of shame or embarrassment about their illness.
"It requires a huge commitment on the part of the family and parents have to be prepared to dedicate themselves completely to help their child recover. It can be done."