The Alliance for Eating Disorder Awareness Rocks!
Do you know about the Alliance for Eating Disorder Awareness? Well, you should! They’re a nonprofit group located in West Palm Beach, Florida. They’ve been around for fifteen years and, more importantly, they provide an invaluable service to those in South Florida struggling with eating disorders.
They sound pretty rad, right? Well they are! Members of their leadership have been featured on NBC and The Today Show and in the pages of The New York Times and Glamour Magazine. It’s safe to say they’re committed to helping all those who struggle with disordered eating.
I recently had the pleasure of speaking to founder and CEO Johanna Kandel and Director of Programming Sharon Glynn. Find our conversation below. I hope you enjoy it as much as I did!
Lighthouse Recovery Institute:
Could you give us some brief background information on the Alliance for Eating Disorder Awareness?
Sharon:
The Alliance was founded in October 2000 by Johanna Kandel, our CEO. Johanna founded The Alliance after her own ten year struggle with anorexia, bulimia, and binge eating disorder. She realized there were very few resources in this area, there were no support organizations, and there was no advocacy network. Johanna started The Alliance of Eating Disorders Awareness on a small scale and we have been growing and increasing awareness and education ever since that day. This year, in October, we will recognize our 15th year of community service providing referrals, support, outreach, education, and more.
Lighthouse Recovery Institute:
Fifteen years is a long time. I didn’t realize that your organization was founded out of personal experience with eating disorders.
Sharon:
Johanna started the organization’s outreach program doing school presentations. We now provide programs and activities aimed at outreach and education, all of which are aimed at health promotion. This includes all eating disorders, positive body image, obesity, and self-esteem. We hold six support groups that are free to the community. We provide a center that provides a safe haven for those struggling. We offer peer counseling. We have a borrowing library. We have a treatment resource center. We do “Lunch and Learn” programming in the community. We go into the offices of health care providers, doctors, nurses, dentists, etc. and educate them on how to properly screen, diagnose, assess and refer eating disorders. The Alliance travels across the country speaking to healthcare professionals, the lay population, students, and others on the topic of eating disorders.
Learn more about Johanna & Sharon!
We have two referral guides. Our Florida Eating Disorders Treatment Referral Guide, and our U.S. Eating Disorders Treatment Guide. The Florida Guide is a list of providers in the state of Florida, by city, who specialize in treating eating disorders and other comorbid diagnosis. Our Florida Guide is 100% funded from the proceeds we raise at our walk every year. There is no charge to be listed in the guide and there is no charge to receive the guide. We printed 12,000 copies in 2014 and mailed them to every school in the state of Florida, from pre-K to post-grad, every hospital, and every health department center. We have them available at each training we conduct, every conference we attend, and by phone and email request.
Our U.S. Eating Disorder Treatment Referral Guide is a comprehensive list of treatment centers across the country that specialize in the treatment of eating disorders. Again, there is no charge to be listed in the guide, and no charge to receive the guide. We do sell advertising space in the guide to pay for the design, printing, and mailing. We sent 22,000 copies of the U.S. guide to colleges and universities across the U.S., to hospital discharge planners, and etc. We also have them available at each training conduct, every conference we attend, and by phone and email request.
Lighthouse Recovery Institute:
That’s a pretty large reach for both guides!
[BLUECTA title=”Addiction is not a choice!”]866-205-3108[/BLUECTA]
Johanna:
Our reach for the Florida Guide is approximately three million people and our reach for the U.S. Guide is estimated at around eighteen million. That is just for the hard copies. Both of our guides are accessible online. On the first day that our 2014-2015 guide was online, we had about 1,600 downloads in the first few hours alone.
It is a real great resource providing comprehensive information in one place. Our goal with both of the guides as well as our mission at the organization, is access to care. We want people that are struggling, as well as their loved ones, to get the support they need.
Lighthouse Recovery Institute:
I didn’t realize you sent out these guides and offered education on where to receive treatment on the level that you do. It’s admirable. What are some of the ways your organization is doing community outreach and education in south Florida?
Johanna:
We do a great deal of community outreach. We are a community-based organization. First, we have school presentations. This ranges from going into middle schools and high schools, to colleges and universities. We offer different presentations for different levels of schooling. Our middle school presentations speak to body image, self-esteem, and social media. In high school, we’ll introduce more information on eating disorders. In colleges, we’ll absolutely talk about eating disorders. We also go into nursing schools and masters level programs.
We also provide what we call a “Lunch and Learn” program. We go into primary care providers. We present on how to identify, assess, and refer people for treatment. Often times, it’s our primary care providers who don’t receive the necessary education to assist them in being able to detect eating disorders.
As Sharon said, we hold six free support groups in the office. We have support groups for adolescents who are struggling. We have support groups for those individuals who have dual diagnoses with eating disorders and substance abuse. We have a binge eating disorder support group. We also have a friends and family group. We also have two pro recovery groups – one in West Palm Beach and one in Plantation.
We definitely infiltrate the community by doing presentations for students and professionals. We do community trainings for clinicians, as well. Between our impact directly in the community and trainings and phone support, we are that beacon of hope in the community. Everything we do, across the board, is always free of charge.
Lighthouse Recovery Institute:
I wonder if you can talk a bit more about the difficulty that doctors have in identifying eating disorders. I was doing some research and it seems like medical professionals everywhere are in the midst of an epidemic of a lack of knowledge of how to properly diagnose and treat eating disorders.
Sharon:
I am a licensed nurse in the state of Florida. I graduated nursing school only eleven years ago and I received about twenty minutes of education on eating disorders. That education was being given the names and definitions and then we moved on.
I can tell you, in medical school, it is not much better. There is a deficit on eating disorder education when residents and interns are being trained on mental illness. There is still this stumbling block that people don’t accept eating disorders as a brain disease. Medical schools haven’t come full circle yet and don’t understand that it needs to be a required part of the curriculum. We recently presented to third year medical students, and I can tell you their jaws dropped because they didn’t know even a third of the information we gave them.
What we do when we go into a health care provider’s office or hospital is to train the staff on how to assess and diagnose. We have pocket cards that we’ve created for health care providers that fit into their lab coats. These cards have questions to ask, information on what blood work to run, tests to order, and the results to watch out for. We explain to them the signs and symptoms and talk about the office culture. We talk about where the scale is located in their office. We talk about how to treat those patients that come in and talk to the doctor or nursing staff about how they are struggling with an eating disorder. We offer them brochures and the treatment center guide. We offer our service as a resource for their patients. So, it doesn’t end when we leave the office. We have continual relationships with these health care providers and their patients.
Lighthouse Recovery Institute:
That seems like a pretty noble mission. I was surprised to hear what you’d said, Sharon, about the education just not being there, even for healthcare professionals.
Sharon:
Part of that lack of education comes back to the research that’s available. Unfortunately, anorexia nervosa, as one example of an eating disorder, has the highest mortality rate of any psychiatric disorder. That’s a fact. However, in research dollars spent, it receives about one-tenth the research dollars that schizophrenia gets, even though anorexia has the highest morality rate. So, part of the lack of education issue is a lack of current research, statistics, and information to provide for medical students.
Lighthouse Recovery Institute:
That’s a pretty large divide between the funding available to what are thought of as “traditional” mental disorders and those that are actually the killers. I didn’t know that anorexia had the highest morality rate of ay mental illness.
Sharon:
There’s a true disconnect there and we need to work to change that! That is a part of what we do with our advocacy program. We are in the state capital in Tallahassee and we’re in Washington D.C. every year. We’re in D.C. twice a year, actually, speaking with our congressional representatives to reduce that discrepancy between the research dollars and education. We are advocating to create a true parity for mental health treatment. We do this through letter writing campaigns, phone calls, and or direct presence and conversation in both capitals, state and national.
Lighthouse Recovery Institute:
Could you talk a bit about the Celebrating EveryBODY campaign and about the everyBODY eating disorder awareness walk?
Johanna:
We realize how important size, shape, weight diversity, and acceptance is in our society. That’s how we came up with the celebrating everyBODY idea. We live in a world that can be discriminatory about shape and size. There’s a lot of body shaming going on, where it’s being very small or being bigger than what’s “accepted” in our society. Really, celebrating EveryBODY is about coming back to the idea that health equals health, not skinny equals healthy. It’s about acceptance of self.
Click here to see the Celebrate EveryBODY flyer
What we do, especially in college clubs, is body image work. We know that body image and eating disorders are two separate things. Poor body image does not cause an eating disorder. I want to put that out there. Eating disorders are biologically based mental illnesses. However, we also know that much of our society is dealing with poor body image, low self-esteem, ad disordered eating. That’s really what celebrating everyBODY is. It’s about fracturing our unrealistic ideals and realizing that beauty comes in all shapes and sizes, and health comes in all shapes and sizes.
Now, the walk came out of that. It’s only one mile long. We purposefully made it only one mile long so it’s safe for people on any part of their journey to recovery. Often times, individuals with eating disorders will use exercise as purging mechanism, so we keep the walk very limited.
It’s a slow, mindful walk in a beautiful park. We hold our walk in South County Regional Park, Boca Raton in February of every year. We recently completed our fourth walk. The first year we had about 200 people. Last year, we had about 650 people. Our goal this year was 800 people and we made it! It’s a phenomenal morning of inspiration, community, recovery, and hope. The reason I say that is because it’s inspiring to see people come together on an issue that’s so shamed and stigmatized. It’s inspiring to see people to come together and say, “We didn’t choose to have eating disorders but we do choose to have recovery.”
My favorite memory of any walk is actually from the first year. I was holding the banner with several other people and there was a family behind us. A mother, father, and two children. As we were walking, the father leaned over to the children and said, “Isn’t it amazing that we can support mommy this way?” That really…is such a great example of our walk. It is community based. We have speakers that are in recovery. The walk is very inspirational. Eating disorders are very grave. They’re very serious, but there’s hope. To know that there’s hope, that there’s recovery, is amazing. Complete recovery is possible.
What’s awesome about our walk is that 100% of the dollars raised go to fun our Florida Eating Disorder Treatment Referral Guide. All the funds stay in Florida. It allows us to directly impact access to care. It’s really nice for people to know that they’re raising money for something that’s going to impact eating disorder care across the state. We hope the community will come together and join us on February 27th, 2016 for our next walk!
Check out the Alliance for Eating Disorder’s Site Today!
