June 2nd, 2016 will mark the first World Eating Disorders Action Day, an internationally-recognized day during which members of the eating disorder community, including affected individuals and their families as well as researchers and policy makers, have united virtually to increase access to accurate information, eradicate myths and collectively advocate for resources and policy change. Kartini Clinic is honored to have been asked to submit a blog post about our hopes and goals for Eating Disorder Action Day 2016. We are even more honored to be among the hundreds of organizations and thousands of individuals who are joining forces, worldwide, for this remarkable event.
Genetics and epigenetics may be the future of eating disorder treatment, but early recognition is still our best defense.
Like the rest of medicine, pediatric eating disorder treatment is highly likely to undergo a revolution as more becomes known about the genetics, epigenetics and biochemistry involved in eating disorders. Family pedigrees, twin studies and more recent genetic research have firmly established the high heritability of these disorders. Epigenetics teaches us about the power of the environment to modulate and induce change in the physical brain.
So-called “personalized medicine,” furthermore, may change the playbook for treatment of individual patients long before their genes are elucidated or epigenetic changes deduced. For instance, it is already possible to order genetic tests designed to tell us which patients are likely to respond to which psychotropic medications and which are likely to experience side-effects from them. This single application of “personalized medicine” will almost certainly offer an improvement over the “trial and error” approach common in psychiatry and medicine today.
And this is just the beginning; we’ve only scratched the surface of the wealth of personal information still to be gathered and analyzed. As a wealth of data on weight homeostasis comes in from the world of obesity research, treatment of childhood eating disorders is likely to require a more sophisticated understanding of metabolic laboratory values than in the past. The role of insulin and the insulin/glucose ratio in weight recovery is likely to be one area of further research. Many patients who recover from anorexia nervosa go on become overweight as adults. Understanding why this happens and what can be done to prevent it may provide insight into how refeeding should be managed and what alterations in brain chemistry may contribute to the development of bingeing and/or purging behaviors at later stages in the illness.
When it comes to prevention, lab work is no replacement for early recognition and parents are key players when it comes to catching eating disorders early
On the issue of prevention: we don’t know what actually causes anorexia nervosa. The natural history of this brain disorder is, to date, very poorly understood. Whenever this is the case, primary prevention is not possible. For example, we could not prevent tuberculosis (except accidentally) until we knew that it was an infectious disease. That leaves us with what in epidemiology is referred to as secondary prevention, otherwise known as early recognition.
It is now clear that even children as young as six years of age can develop eating disorders and begin to starve, slowly at first, with simple food refusals and more intensely later on with overt weight loss. And the DSM 5 has finally recognized something international pediatric teams have known for years: children may not manifest all of the symptoms seen in adults while still having the same disorder or an evolving form of the same disorder.
Recognizing that an eating disorder is present, or even being open to the idea that an eating disorder may be at play if a child is losing weight or failing to gain weight, is essential to secondary prevention. When the brain growth and physical growth of a young child (6-12 years) goes unrecognized, we may never be able to completely restore them to health.
Let’s help parents — the best observers of their own children
For World Eating Disorder Action Day 2016, let us recognize and resolve to teach parents, as the best observers of their own children, the signs and symptoms to be aware of and the importance of acting as an “early warning system” for health care practitioners. It sounds simple but it needs a concerted educational effort from providers and parents alike.