Chromosome 13

Thirteen has always been my lucky number. Such a contrarian.

So, why didn't I get all excited about the recent study about genetics and anorexia? I've been asking myself this question, too.

Yes, I'm happy. It is good to get to the root of what might be predisposing people to this terrible illness. Insight into genetics will help us both figure out treatments and lift off some of the mystery. Anorexia has the opportunity to join other serious mental illnesses instead of existing in a separate world of self-satisfied conjecture.

But I've been at this for eight years and this kind of new insight has a recognizable pattern: breathless media coverage, a new slide on some PowerPoints, occasional mention from the podium at events.

2002, 2005, 2007, 2009

But in the exam room, the media, the advocacy world: not much change. Clinicians outside the field aren't aware of this kind of research because it doesn't come with usable recommendations. Clinicians inside the field are rarely trained in research methodology and often misunderstand the implications - in this case because of a mistaken idea that genetics is destiny or thinking it doesn't relate to what they are doing with patients and their families. The media isn't really changing its narrative and neither is Aunt Freda.

Lately I've learned just how little the ideas of "evidence-based" and genetics and biology penetrate practice. In fact, I'm coming to understand better why these very words turn people AWAY from learning more or using this information. I find myself wondering "what would it take?"

What would it take to really change people's views on genetics, for example? On brain function? Is it the volume or the quality or the reputation of the researchers that will make this information important in actual practice? People like me are always looking for information like this - it confirms what I already understand and believe. People who are automatically skeptical on these topics might not feel a need to re-think until and unless someone finds a test strip that changes color or a brain scan with measurable shapes.

The point of establishing anorexia as a genetic predisposition isn't to develop a pill or throw away the other things we know. It is to STOP seeing the illness as willful, conscious, and incurable. It is is see it for what it is - and let go of what it is not. But I still don't know how THAT message will make it to the people who need it: people treating our kids every day.


  1. Interesting link Laura; thanks for posting :) As someone who suffered from AN for far too long (> 25 yrs) I totally, utterly, absolutely agree that it is not a wilful, conscious choice. For that reason, research that dispels myths that (1) people can 'choose' to become anorexic if they so wish (and believe me, there are a lot of 'wannarexics' in this world...), or that (2) we are just being rebelious brats when anorexic - is something I welcome. 

    Nevertheless, the hypothesis that AN has a genetic basis doesn't necessarily facilitate its treatment, unless we believe that the genetic risk is expressed through dieting and weight loss - which perhaps it is, and that refeeding is the cure - which is partly/wholly true. 

    And if dieting, or even inadvertent weight loss are 'triggers', this doesn't exclude lifestyle stressors that may lead a susceptible individual to lose weight. In theory, lifestyle stressors could include media, bullying, abuse... all of which therapy can help AFTER weight gain.

    The idea that AN has a genetic basis appeals to me for reasons I cite above. That is, provided, as we discussed last week, lifestyle stressors that can 'trigger' dieting/weight loss are not ignored, or considered irrelevant. Not all individuals with AN have experienced traumatic experiences, but some have - and such individuals can benefit from focused therapies for trauma or co-morbid difficulties. 

  2. Sometimes (well, maybe always) it takes a critical mass before an idea - or even a scientific fact - takes hold.

    What will help get the message to those people treating our kids? I think you are doing it, as are other parents and therapists who blog, write articles and present at conferences. When the information is out there, parents can do their homework, then turn down therapies that have poorer success rates and go looking for the ones that work. It will snowball.

    When we realized our daughter was anorexic, we were embarassed as well as shocked and scared. We the common vague ideas of parental guilt, and knew of no treatment other than hospital/inpatient type programs. When I began to research, I found more of this to be sure - but I also learned about genetic predisposition and family-based therapy. With knowlege and hope from F.E.A.S.T., MaudsleyParents and like-minded sites and blogs I was able to keep looking when the first providers I spoke with said I needed to send my daughter away, and my husband and I were able to stop a toxic conversation about "what was wrong with us".

    We're only one family with one kid. But we were able to put together a treatment team that "gets it" and we have talked to friends and families and co-workers and teachers - so now there are a several dozen more smart adults out there who have learned something, and who will remember and read and talk to others.

    THANK YOU, and keep up the good work.

  3. The autism community has done this in an amazing way over the past 30 years or so. Went from widespread blame of parents to a recognition of autism as being biologically-based. Organizations, researchers, clinicians, even the media call it a neurological disorder. They have even succeeded in making sure it is viewed as a biological disorder while emphasizing the importance of parent training and family involvement in treatment. I'm not sure exactly how they did it but looking at the historical process may provide some direction for the ED world.

  4. The autism community has indeed been a model for me - both of the good and the cautionary type!

  5. I think part of the problem is that there are still so many degrees of separation between RESEARCH and TREATMENT.

    It's one thing to say, okay, this is not a choice, it's a biological illness (I can picture our family doc 'getting this' and then saying...)...NOW WHAT?

    We still don't have any effective professional guidelines for treatment. My doc can't go to any definitive reference source and find a 'recipe' of what to do once he's made the dx.

    And even if he could...or if he started to connect the dots through evaluating current treatment options (his own or the parents' research--Lock and LeGrange's new study, etc) and wanted to recommend FBT...once again, I see him with his eyebrows up saying, "NOW WHAT?"

    Where does he find the almost non-existent help for us? There are two trained FBT therapists in our metropolitan area (population almost 3.5 million).

    There's just such a gulf between "I understand the biology of this" to "This is what you need to do and how I can help you."

    I was really hoping that the NEDA conference would help 'bridge the gap between research and treatment', since that was the theme. How do we apply what we know about the biology of this illness to the way that we treat it? And then how do we bring effective treatment to the people who need it? We still have such a long way to go.

  6. It seems to me we just HAVE to brainstorm ways to get more people trained.


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