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Happy NEDAwareness Week 2009!

This is an exciting week full of events and highlights the message to “Get Real” about Eating Disorders as an illness not a choice and to continue raising awareness, prevention and advocating for those affected.

If you haven’t yet had the opportunity to view two powerful films: Swept and Beauty Mark and reside in the New York area you are in luck. Pace University along with NEDA will be Turning the Lens on Eating Disorders showcasing both films and will have the artistic panel of actors, directors/producers as well as ED educator panelist, Sondra Kronberg available for Q&A.

Both films offer up a great opportunity for further discussion and understanding and reach beyond the somewhat palate-less offerings unfortunately being held in most areas.

So kudos to you NYC for taking creative initiative and stretching limits! Sara and Stephanie I’ll be there in spirit– you both are inspirations!

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Umbrella Erin Hael

Anyone involved with eating disorders knows all too well the commitment, expense, and time that treatment and recovery encompass. There are no quick fixes on this journey towards reclaiming ones’ Life back from a devastating illness that can lead to chronic health debility and even death if left untreated.

Just mention the word “insurance” to anyone acquainted with eating disorders and you will undoubtedly get a credible grunt of frustration or despair when it comes to what insurance companies “allow” for treatment and follow up care. And for those of us who have loved ones requiring the most intense level of care in either residential ED programs and/or partial-day programs for any length of time, insurance becomes yet another demon to lock horns with; and certainly not what caregivers, families and sufferers need tacked onto an already onerous battle to save someones Life.

We have had many a battle with insurance to get our daughter the care she deserves, and to push beyond the bullying that desperate parents face when told your child cannot get the medical services s/he needs until you’ve taken out a second mortgage, gone bankrupt, taken out exorbitant loans because extended coverage was denied, but by all Dr recommendations is absolutely necessary in continuing care and treatment.

The manner at which eating disorders are covered by insurance (and obtaining equal access to quality care is another needle-in-the-haystack!) is still quite crude that my blood boils when listening to parent after parent exhaustively stating the same heartrending scenario over and over. And speaking with parents and sufferers outside the US, you find some of the same- sometimes even worse.

Well, after stating all this rather negative reality, there is some hopeful news to share with the now infamous New Jersey Blue Cross/Blue Shield class action federal court case which restores my belief, coupled with the progression of Mental Health Parity, that 2009 will continue to move forward and keep chipping away towards change in improved coverage and treatment of eating disorders that is well overdue:

 
January 10, 2009 Horizon Blue Cross/Blue Shield of New Jersey has tentatively settled a class action pending in federal court in Newark, New Jersey involving reimbursements for medical expenses relating to the treatment of eating disorders. The terms of the settlement must still be approved by the court.

Although Horizon covered treatments related to eating disorders (primarily anorexia and bulimia), including hospitalization, outpatient treatment, psychotherapy and nutritional counseling, there were benefit limits on such treatments.

Under the settlement terms, Horizon has agreed to pay claims for eating disorders that were denied because they exceeded the plans’ maximum benefit for non-biologically based mental illness.
Horizon has also agreed to give parity treatment to eating disorder claims for Horizon insureds in the future and to enhance its appeals procedure by providing the right to select review by an eating disorder specialist of all claims denied on the basis of medical necessity.

… then shouldst have it for gingerbread*.   -William Shakespeare

      * Or in my case fresh carrot cupcakes

                                  _______________________________

Summer is winding down and it’s been a fantastic couple of months.  Gracious thanks to those of you who continued to email throughout the summer (for almost a month we were too deep in another world to even want access to the internet) with a wealth of supportive and heart-filled thoughts.  I was touched beyond words that can even begin to express my endless appreciation to you all.  And though I didn’t get a chance to respond to everyone in kind as of yet, I just wanted to share, once again how much this has meant to me and our family– merci!**

On another update-note, Drs Daniel le Grange and James Lock will be conducting a one and 1/2 day FBT-Maudsley training targeted towards adolescents with eating disorders in Portland, Maine: September 23-24th.  What a wonderful opportunity to continue to utilize family-based, supportive and evidence backed treatment practices that integrate all those involved within their loved ones’ care and recovery.  Mary Orear, executive director of Mainely Girls is sponsoring this event, for further information click on the highlighted link.

Hope all of you had a restful and recuperative Summer– and looking forward to reconnecting more regularly soon!

-shanti

 

With Dr Daniel leGrange taking his sabbatical in Australia there has been a hub of conference presentations and various skills-based workshops  and training for implementing the Maudsley Method into eating disorder treatment and care as well as informing and assisting families and caregivers of utilizing this Family-Based approach to help their loved one.

The collaboration and gathering of these individuals, families and professionals probably could not have arrived at a better time since Australia has recently been highlighting an increase of younger children diagnosed with anorexia

On a positive note, one Sydney mother describes their experience using the Maudsley Method for their adolescent daughter as valuable and further stated, “It’s not a quick fix. But we’re absolutely stronger as a family. We’ve always been strong.”

Go Maudsley!

 

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.

APF/Getty Images  Bertrand Guay

There is quite a bit of debate heating up lately, even over at ATDT parents are sharing their thoughts on this topic, regarding recent legistlation created by France lawmaker Valerie Boyer that France is passing towards imposing strict fines, even imprisonment against the proliferation and promotion of “pro-ana/mia” within websites, media images, the fashion industry and beyond that continue to hightlight clearly unhealthy anorexic/ED’d-looking, emaciated ultra-thin bodies– “legislating body weight” some are finger-waging. 

The reviews and feedback are certainly mixed, some downright misinformedstiil -and so sorely one-sided which to me only illuminates just how complex these issues are; and more importantly  how much more of this conversation and dialogue needs to keep happening and developing.

I haven’t delved into a full exploration of my opinions on this yet, but I do think while we can’t police every site, ban every image, twisted ideal there certainly is something that we are all responding and reacting to when we see someone who looks so severely malnourished, skeletal and unwell. 

As a mother of a daughter who suffers from Anorexia Nerovsa I do have an immediate heartwrenching reaction to this issue, and do believe there is not just a “personal” responsiblity but public and social conscience we all need to be connected to and address at some basic level without turning a blind-eye and pretending none of this has any impact on society whatsoever– clearly it does.

         

 

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!

 

 

Oh yeah! May 9th (or from what others have been stating but I haven’t found listed: April 25th) heading to the ‘Windy City’- Chicago to check out this city’s native film-maker,  Darryl Roberts documentary that has gotten plenty of accolades; and additional kudos from those who attended last week’s IAEDP conference.

It’s interesting that within the past year two male film-makers  (perhaps more– feel free to share if you know) the other is Glenn Gers and his film: Disfigured  (which a Cali friend of mine got to see during the film festival and loved)  have dared to dig deeper into our culture’s preoccupations within this topic– I say it’s bloody fantastic and about time!

Join the caravan if you are able.

ciao-

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