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The Klarman Family Foundation Grants Program in Eating Disorders Research whose long term goals are to accelerate progress in developing effective treatments for eating disorders has listed their 2008-2010 Award Recipients of outstanding scientists and researchers in the field :

 

  • Wade Berrettini, MD, PhD – University of Pennsylvania – Genome-wide Association Study of Anorexia
  • Catherine Dulac, PhD Harvard University – Genetic & Epigenetic Pathways Underlying the Neural Circuits of Feeding Behavior
  • Guido Frank, MD – University of Colorado Denver – The Brain Reward System Across the Major Eating Disorders & its Relationship to Genotype
  • Angela Guarda, MD – John Hopkins University School of Medicine- Role of the Cannabinoid (CBI) System in Bulimia Nervosa
  • Alvaro Pascual-Leone, MD, PhD – Beth Israel Deaconess Medical Center – The Role of the Right Prefrontal Cortex in Binge Eating Disorder: A Translational Research Study Using Transcranial Magnetic Stimulation (TMS) & Functional Magnetic Resonance Imagery (fMRI)
  • Maribel Rios, PhD – Tufts University School of Medicine – Examination of the Role of Brain-Derived Neurotrophic Factor in Binge Eating Disorder
  • Leslie Vosshall, PhD – The Rockefeller University – Identification of Novel Genes & Circuits in Animal Model of Binge Eating Disorder
  • Jeffrey Zigman, MD, PhD – U.T. Southwestern Medical Center – Mechanism by which Ghrelin & Orexin Defend Against Depression & Anxiety

 

Real scientists and genuine clinicians doing real work to make continued strides towards improved treatments, diagnostic tools, preventative modalities in treating eating disorders more of a reality along with further educating/training the medical community and wider public– CONGRATULATIONS!  Many of us wish you full-speed ahead as well!

-salut

 

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There are few individuals who truly rise to a level of integrity, experience, commitment and compassion when it comes to researching and treating eating disorders that I can honestly say are worthy of note, let alone far too few dedicated and wisely seasoned clinicians available for sufferers and families assisting and caring for loved ones to have equal and affordable access to.   Dr Daniel le Grange at the University of Chicago is most certainly one of those individuals.

For parents who have younger children or adolescents suffering with an eating disorder you are probably already aware how vital early diagnosis and intervention are to restoring your child’s health.  Many families and parents are unfortunately still treated as the “problem” or blamed/shamed into believing that they “caused” their child’s eating disorder, and sometimes, worse yet, doctors don’t even take seriously the early warning signs of eating disordered behaviors as well as weight loss in younger patients and dismiss the parents concerns despite the “highest concentration of most sufferers of Anorexia Nervosa being in the adolescent female population”– time is not on anyone’s side when you delay diagnosis and immediate treatment.

And treatment programs along with many clinicians still leave the family aside and ignored vs being utilized as a vital resource in assisiting and collaborating within helping their child recover, and working with as well as healing the entire family unit.  This makes many of us parents quite irate since we know our children best and were the first to have noticed the drastic changes in our child’s behavior, took initiative in researching treatment options/providers, and then continue to take action, resources and advocate for our children while waiting for many in the medical community and insurance industry to finally wake up and begin implementing true evidence-based treatment strategies that work instead of constantly reinventing the wheel, over and over…

Parents, Families/Partners and Caregivers of Children and Adolescents suffering with this illness please take heart, find continued reassurance, and be re inspired by reading Dr le Grange and Dr Loeb’s Early Intervention in Eating Disorders as well as Dr le Grange’s Treatment Model for Eating Disorders in Children & Adolescents :

 

  • Parents are a RESOURCE in helping the adolescent
  • Most parents CAN help the adolescent
  • Parents have SKILLS to bring to treatment
  • Therapist leverages parental skills and relationships to bring about change
  • FBT-Family Based Therapy is the only evidence-based treatment shown to be efficacious and cost effective

 

On the Centre for Excellence in Eating Disorders (CEED) website, where if you are an Australian native they are also providing FBT and eating disorder treatment study for families free for participants, which they did here in the states at the University of Chicago a few years back.

Some day Eating Disorder Treatment will be this good everywhere — until then, keep fighting the good fight and don’t give up!

-shanti

 

Vrishabha- the sacred bull of Lord Shiva… or more widely known- Taurus, the Bull reigns this month of May.  Our daughter turns 14 on this May 20th, and she definitely characterizes the nature of the bold, loyal, and very stubborn Taurus!

Before being diagnosed with Anorexia, birthday’s had always been a festive and richly tasting  affair.  And while we’ll continue partaking in this annual delight, it’s still a bit difficult for her to freely enjoy what never took a second guess years past.  She’s committed to challenging herself, though there are days she’s not too happy to do so, and will boldly (envision the Taurus with plumes of smoke flaring from nostrils!) make that clear– well, what were you like at 14, minus an eating disorder? 

I’m forever grateful to those who also remain equally, if not at times more, committed to helping support our daughter in keeping focus upon her recovery.  Recovery is not easy for sufferers, and parents still get  bawked a’ plenty and treated with disdain, misjudgment, and left to the side when there requires a much more encompassing circle to complete for true healing and whole-ness to take place.  And dualistically, sufferers also need their own space, their own pace to regain their true Selves back once nutritionally and weight stabilized– this requires alot of Love, patience, perseverance and sometimes a compassionately coordinated “team” all working together.  It makes me think of the Buddhist practice of mindfulness and the use of “a two-handed practice”:

_____

I can sit in my predicament as a witness, not as a plaintiff or judge: ‘Here I am in this situation and I sit squarely in it and breathe into it.  At the same time, I am aware that I can handle this and get through it without becoming devastated.  I can trust my competence neither to become dramatically overwhelmed nor to be stoically untouched.  This sense of competence frees me from fear, since fear thrives on powerlessness.  I imagine myself holding my predicament in one hand and my power to work with it in the other.  One hand is serenely mindful; one is courageously working.  When I hold both realities this way, I am agreeable to things as they are, and I am doing all I can to change them for the better as well.”   -D. Richo 

_____

This resonates with me deeply as a parent and the complexities illnesses like eating disorders present to us.  Now if only we can collectively and universally have provided the very best in evidence-based, highest standard of quality care of treating eating disorders and supporting families in such a comprehensively and equally accessible manner– that would be my wish!

Our daughter has many “wishes” and dreams she wants to pursue.  We simply want to wish her a very Happy Birthday, happy 14th Year, to continued Health and vitality… and to a courageous healthy-stubborn side that can be an anchor for her when difficulties and stress arise.  Knowing she can reach out and ask for help, she’s worth every ounce of her hard work on the road to recovery she has traveled thus far, and that we Love her very, very much!

-XOXO Mom*Dad*Big’Sis

 

This is a day of promise –
Of hopefulness, laughter, and cheer,
For this is a day of remembering
The good things that happened all year –
A day for reflecting on memories
Shared with friends and with family, too,
Who were so much a part
of the joys in your heart
And the love that you felt
all year through-
This is a day of promise
Of the beauty and warmth life can hold,
And of new dreams to dream
and more love to share
Through a year that’s about to unfold.

-Emily Matthews

 

Most of us realize that we need “fat” not only in our diet, but within our bodies– I say most since when you have an eating disorder, know someone with an ED, or care for someone suffering with this illness, specifically anorexia nervosa, which is hallmarked by the intense fear of gaining weight, this is a very difficult truth to swallow as well as visually accept within ones’ physical body.  

There are also some studies that suggest for some this “fear” can be a precusor to eating disorders  among the array of environmental, behavioral influences as well as genetic and/or biochemical predeterminers that scientists are still compiling and discovering that can leave some individuals much more susceptible than others to either severe eating disordered behavior, EDNOS, or a severe diagnosed eating disorder that requires serious and comprehensive treatment. 

What’s also intriguing is the work by researchers continuing to unfold in evolutionary biology, genetic imprinting, and epigenetic inheritance which I’m certain there are correlations within these findings and eating disorders that have yet to be fully available and utilized, but may be able to provide us with a much more inclusive picture behind the illness and how to improve prevention and treatment.

There was a recent study highlighting the benefits (mostly catching everyone’s eye with the glorification of our ever evolving rump, or as writer Debra Dikerson slammed in Salon.com last year about mainstreaming “Gi-normous butts”) of subcutaneous fat, which produces hormones known as adipokines found to boost metabolism (of course, I’m assuming this study will also fuel the weight-loss industry and war-on-obesity too) found in the booty area as well as belly and showing to be protective against type2 diabetes, but also reaffirming the adage that “diets don’t work” and briefly explains why this is part of the reason it’s difficult to keep that weight off once lost; and that our fat cells are set during adolescence and don’t decrease, but do actually expand in size.   

And while I don’t embrace the the good/bad dichotomous thinking and categorization of really anything when it comes to our daily living and Life– you tend to find things more in shades of gray or muted with other colors vs just a pigment of one– the study is looking at two types of fat: subcutaneous and visceral , and where they are found within the body.  Subcutaneous tends to be in the booty and stomach area, and has more benefits vs visceral, which tends to be the gunk blocking arteries, causing damage to organs– sorry to say you’re bad visceral, or maybe scientists just haven’t fully found out what you’re doing and why you are getting such a bad wrap. 

Another study that continues in similar dialogue and highlights the complications of metabolic syndrome and that this can be triggered by overeating, which is correlated with weight gain, especially if done consecutively over a sustained period of time, and makes me wonder about endocannabinoids and their role cause/effect in obesity  and how this, if at all correlates.  The study also points to our fat cells being set during adolescence,  but Dr Stephen O’Rahilly of Cambridge remains unconvinced, and isn’t prescribing to this determination just yet.

Maybe another more basic message to keep at forefront is that it’s not nice to fool with Mother Nature– she rises up with a vengeance.  Our bodies have evolved over time and there is inherit wisdom to what we carry around with us everyday.

-Love Thyself

 

I love how the birth of International No Diet Day began “from a picnic in Mary’s living room” in the early ’90’s and fertilized it’s magnitude world-wide.  Ms Evans-Young is herself a recovered anorexic and wrote the book Diet Breaking: Having it all Without Having to Diet and it couldn’t be a better time than now to let the message sink in– deep and with reflection.

Largesse gives the background on the term: size esteem  which was initially coined by Richard Stimson, husband to a contributing director/writer at the site, Karen Stimson who explains it perfectly:

– Feeling acceptance of, respect for, and pride in one’s body, whatever its size or shape

But I like this analogy even more highlighted by Cheri Erdman EdD who wrote the book Live Large! and thought about it as a simple yet poignant equation:  Size Acceptance + Self Esteem = SIZE ESTEEM

Either way you think about it, the insanity of dieting, wanting to force our bodies to be a size/shape it was not genetically determined to be– and thankfully so for the beautiful variety of shapes, sizes, colors, we all add to the collage of life, is quite dubious. 

It’s even further magnified when you or a loved one suffer from an eating disorder and are trying to regain your health and follow through with recovery and maintaining wellness in a seemingly endless fat-phobic, diet-crazed, fashion-consumed environment.  Our daughter at times can take on this incessant self-doubt and accusational inquiries about why she has to eat what she has to when others, her classmates, etc. eat less than she does and are constantly discussing “fat” laden topics— it’s enough to make anyone go a little bonkers.  Advertisers, marketing, the health ins field, even health care (hey, let’s face it– those mega-million dollar hospitals that now look more like shopping malls want  to treat the ill business) and the all time winner: the diet industry.

Stuffed and Starved is a title from researcher Raj Patel more about food prices, the global-glut, etc. but I had to think about this a little bit more this morning how it really ties into so many other layers of Life– and will be worth dissecting and playing off the similar as well as dissimilar dualities we can only pretend don’t exist, or just think is someone else’s “problem” to fix, get over, medicate– like the cliched remark I’ve heard countless times since our daughter was diagnosed with anorexia- “why doesn’t she just eat?!”, then the instant turn against parents when our children don’t eat = it’s your fault, you did something “wrong”, etc.

Yes, INDD is a day we find relative and meaningful in our family.  And with the weather reaching low 70’s, sun shining– I think a picnic is just what we’ll do to celebrate this day!

-shanti

Tula Karras

 

When your child is diagnosed with an eating disorder your life changes- permanently.  There is no looking back (though you do, and weep and grieve for the child you once knew and still know lies underneath the ED just waiting to find his/her way back– and they do!) there is no denying the obvious even when this illness can completely blindside and throw you off your center until you fully understand and grapple with its complexity– and even then you can still be utterly perplexed. 

But you take action, keep your son/daughter safe, provide nutritional sustenance, comfort and support.  You find the appropriate medical care, treatment facilities and resources that will help him/her, as well as yourself,  find their way back to health, well being and continuing to work towards their full recovery– however that needs to happen- you just do it.  We’re parents, Moms&Dads, families, grandparents, cousins, all taking those measures and lending a hand because we love each other and want to see those suffering find their way back to their true selves, living their dreams, passions and finding happiness- not perfection- in what gift of our Lives we have been given.  Life is certainly not an easy journey, and growing up, becoming an adult, raising a family, fumbling through difficulties– these are all illuminating lessons to help bring us back to grace and compassion, wisdom and understanding.

Something within my own inner perspective and thinking is having a bit of a snag though.  Maybe because I know how damn hard it is to wrestle with an illness our daughter was diagnosed with over a year ago.  Knowing how hard she has worked to get to where she is now, how much more persistence and vigilance she will continue to have, especially now that she is fully discharged from the eating disorder program she has been intensely involved with for several months, and facing a culture and society that seems to be ironically having increased insecurities, issues and numbers of individuals (especially within older adult populations) with “disordered eating” patterns and behaviors, which to me on the outside look and behave just like our daughter did prior to her being diagnosed with Anorexia Nervosa. 

There is this surreal sensation that comes over me when I briefly skim over an article in SELF Magazine that highlights a partnered survey studythat was done in collaboration with Dr Cynthia Bulik and the University of North Carolina that states that “3 out of 4 American Women have disordered eating” and the magazine survey whose participants numbered over 4000, and probably still counting on both the survey, forum and follow up, continue to show an increase in disordered eating patterns and ranges of destructive habits that clearly as Dr Margo Paine boldly states exemplifies, “Dieting is a national pastime for women” and “as a society, we don’t see the problem“.

The survey also goes further into describing additional categories that 6 out of 10 (1 out of 10 have eating disorders) women who are categorized as “disordered eaters” describe themselves into specific subsets:

 

* Calorie Prisoners

* Secret Eaters

* Career Dieters

* Purgers

* Food Addicts

* Extreme Exercisers

 

Of course, none of these descriptors are new.  But while some studies and stats have been pointing towards an increase of younger individuals being diagnosed with eating disorders, which may indeed be on the rise, though it’s always difficult to know whether we are only getting better at earlier diagnosing and intervention; and if some of the outcry and attention to the issue is creating the continued awareness, discussion, research and treatment standards.  But this survey, as some previous others, is showing the age range to be in the adult category of a 25-45 year old female base, and from what I’ve read in some previous studies, this seems to be more consistent and increasing if you are to follow the conclusions.

Yes, I’m perplexed and even angry.  I don’t want to see anyone needlessly suffering with any disordered eating behavior(s) that can have even the subtlest of impact upon ones’ health- period.  But I also have another irritating irk in thinking about the continued impact these findings, if they are showing continued rises in eating-disordered behavior have upon our youth and young adults who are watching, reading, and taking in this information too.  What, if anything does this ultimately translate to and what can be done to counteract this deranged preoccupation with dieting, body-dissatisfaction, and just overkill of the human body? When will the craziness stop just long enough to take a step back, breathe, and find acceptance and compassion for who you are as you are being enough, being worthy– because we all are.

And our kids need us to model and reinforce these strong capabilities and common-sense practicalities.  When I see a book titled: My Beautiful Mommy I think this is a joke, right? But I find that it’s written by a plastic surgeon, and really set on promoting this “upkeep” ideal while cunningly proclaiming under a guise of “help”.  Are we so far gone into our self-absorbed psyches that we are so easily swayed and coerced into finding this worthy of publication to begin with? Apparently so, as the book is being sold and bought, joke or not– some are taking the bait and seem to be biting hard, though not into much that will keep one nutritionally and mentally stable.

Our daughter has to not only find safety, stability and assurance within her home environment, but the world outside as well.  And this rant of a thread I’ve lowered myself to in this post just proves what an apparently obnoxious mother on a mission I am (imperfections and all- silicon free and able to eat minus fear thankfully) to keep my daughter moving towards a healthy, happy and internally sustained recovery and passionately what that means to me.

Ladies and Gentlemen, can this insanity please begin to find it’s way back in the hole from where it came?  Like a fire out of control, can we begin to find some means of putting this insatiable flame to some simmering rational end? Will these studies and polls just continue to bloom, boggle and frustrate so many of us, while invoking the opposite within others to think less of themselves, and to possibly court a potential ED, especially for those who are either biologically, physiologically and/or genetically predisposed and vulnerable?

To continued Health, Strength & Insight for us all.

         

 

Some incredible individuals and parent advocates have been hard at work the past two days in Washington working with legislators on Capital Hill for the annual Eating Disorders Coalition Lobby Day to push forth further measures and legislation in the continuation to further progress within treatment, research, prevention and education of eating disorders. 

This is vital and necessary work.  I for one am so very grateful, since I was not able to attend, for all of these individuals who have committed themselves towards improving the lives of those affected by this devastating illness and the families that are doing so much of this work solo, without much support, treatment resources, and clinicians adequately trained to best help their loves ones. 

Thank you EDC and its sponsors, Ms Laura Collins— you are the best!

 

Continued studies, most recently published by Dr Mark Zimmerman for Methods to Improve Diagnostic Assessment and Services (MIDAS), and additional colleagues of both Rhode Island Hospital and Brown University, indicate that the current DSM-IV lacks adequate “diagnostic criteria for eating disorders”, and that “researchers recommend a broadening of the criteria” since currently only anorexia and bulimia are “officially recognized and formally defined”.

Makes definite sense.  Especially since DSM-IV was published back in 1994, and in reading the current DSM-V “white papers” , “DSM definitions are virtually devoid of biology, despite a large body of research that indicates a neurological basis for most mental disorders”.  And that for over the past ten to fifteen years, there has been a steady increase of research and findings developed within eating disorders expanding beyond just AN and BN, but also EDNOS (Eating Disorder Not Otherwise Specified) which counts for “more than half of the patients in treatment centers”, as well as Binge Eating, COE (Compulsive Over-Eating), and other “subthreshold variants” that clearly expand the scope of eating disorder symptoms and diagnosis.

From what the DSM-V timeline indicates, this much needed and updated manual will be published sometime in 2011, which seems like an eternity for many of us already too familiar with the complexity of eating disorders and more often inadequate care/treatment of our loved ones. 

So it’s encouraging to see the continued efforts and commitment of researchers and clinicians in the trenches (along with the rest of us!) collecting the data, and analyzing the results for peer review, publication, and improved teaching/training- which ultimately leads to better treatment and recovery options for those in need.

It’s encouraging to know that some incredible clinicians are furthering the research and support of the efficacy of Family-Based Therapy within treatment of adolescents who suffer from eating disorders. 

As parents of eating disordered children we know how painful it is to watch our children succumb to this deadly disease.  And what makes things even worse is not having treatment incorporate the entire family to best help, educate, empower and support not only our loved ones, but ourselves as well; and also to help heal and guide the family through the journey we take on the road towards our child achieving full recovery.

Dr Walter Kaye with the University of California, San Diego is heading probably one of the largest research studies jointly with Stanford School of Medicine to find the most effective FBT, BFT, and placebo controlled trials including more studies into the use and efficacy of fluoxetine (Prozac) in the treatment of adolescents who suffer from Anorexia Nervosa.

Dr Kaye is certainly not the only clinician to take the lead in pioneering this momentum, Dr Daniel leGrange from the University of Chicago, Eating Disorders Program also has conducted a 5yr NIMH study of similar worth, and at this time the data that has been collected is being sent for publication.

Too many today still adhere to a very outdated, erroneous and unproductive notion that dysfunctional families/parents are the sole cause of eating disorders.  Yes, this is the 21st century, and when our daughter was diagnosed with AN last year, not only were we carrying very limited Karen Carpenter knowledge of ED’s, but to our complete shock and dismay,  the hospital where our daughter spent the next 20days- along with the next year of hit&miss follow-up outpatient treatment- had Dr’s, nurses and staff who seemed to be practicing a very draconian and almost at times inhumane form of ED treatment/care with even less experience and knowledge, and horrifyingly no real training and background in ED’s, and how to help sufferers and their families/carers beyond the basic “medical stabalization”.  I never would have imagined through our experience, how backwards and utterly frustrating this road to finding quality, intelligent, evidenced-based and compassionate care would be.

So there is continued reasons to be hopeful and remain optimistic that at some point ED treatment and standards of care will indeed get better, and our voices will be heard, blame will take a vaporizing exit, and efforts and focus will stay centered towards much more rational, ethical, affordable, and compassionate care for ED’s.

… I always say, especially when it comes to ED’s and medication- specifically anitdepressants and children/adolescents. 

It’s a call that I personally feel many clinicians make way too early before steady gains in weight, and full nutrition have been sufficiently addressed, and this takes time.  As parents, we see a significant change in mood with increased nutrition, as well as the opposite when our children are not eating enough or metabolizing properly during refeeding and recovery. 

Of course this will be an intimately personal and individualized decision, and antidepressants, without a doubt, have helped countless numbers of inividuals from seemingly endless and needless suffering. 

And you would want to have a physician who would have all the up to date, accurate, and forthright information in helping you make the best decision possible for your child, but after reading Dr Turner’s published report/study as well as the New England Journal of Medicine’s abstract about “selective reporting and clinical trials”, and “efficacy overstated for antidepressants” I’m convinced it’s vital to continue scrutinizing, as well as reseaching the use of antidepressants within the treatment of ED’s; and question why some clincians seem a tad overzealous to prescribe them.

And as some counterbalance, not completely overlooking how antidepressants have assisted many, CEO David Shern of Mental Health America shared a brief response.

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