Michele Herenstein and Holly Wade out on a breakfast pass from the Eating Recovery Center one year ago in Denver, Colorado
Michele Herenstein and Holly Wade out on a breakfast pass from the Eating Recovery Center one year ago in Denver, Colorado
Michele Herenstein and Holly Wade out on a breakfast pass from the Eating Recovery Center one year ago in Denver, Colorado
Dr. DeSarbo at a previous conference
Dr. DeSarbo at a previous conference

By Michele Herenstein

Fuzzy slippers, funky pajamas, stationery, pens with feathers attached, DVDs (not about exercise or dieting), novels, journals–what do all these things have in common? They are gifts that are acceptable to send to a patient in a residential treatment center. When I was in treatment and received People, Us Weekly, Glamour, and various other magazines, they were gently taken away because the pictures inside of skinny women and articles about exercise and dieting had the ability to “trigger” me to want to stay thin–deadly thin. Packages were a huge excitement at the Eating Recovery Center (ERC) in Denver, and 4 p.m. was a highlight of our day as patients lined up to see if they had received a package or letter.

There is so much I want to share with you about eating disorders and about how you can get help or be there for someone as a friend, family member, or just someone who cares. But I must stay on topic and tell you about the largest eating-disorder conference on Long Island, to be held at Hofstra University Student Center Theater in Hempstead, NY.

On May 1, as I fly home from Florida the day after Pesach ends (hoping to make it in time for part of the conference), national experts will be at Hofstra discussing anorexia nervosa, bulimia nervosa, binge-eating disorder, body dysmorphic disorder, compulsive exercise, and related conditions. “Long Island is one of the regions in the U.S. where eating disorders have the utmost prevalence,” says Dr. Jeffrey DeSarbo, a board-certified psychiatrist and the medical director and conference host of ED-180. “We’re hosting this conference because there is a great demand for information about eating disorders and treatment from patients and families, and we’re bringing to Long Island some of the best physicians and clinicians in the country.”

In order to deliver this strong lineup of presenters free of charge, ED-180 has enlisted sponsorships from many of the best treatment centers, including Oliver-Pyatt Center in Florida, UMC Princeton in New Jersey, the Eating Recovery Center in Colorado, Monte Nido in California, Silver Hill Hospital in Connecticut, and Cambridge Eating Disorder Center in Massachusetts, to name but a few. Sponsors will have exhibit tables and representatives at the conference, and will be able to assist attendees by offering support and guidance.

“Every year, it is amazing to see all these people coming together at this conference to share their stories and find answers to their questions about these devastating conditions. It is such a compassionate community experience,” says Susan Jungman, one of last year’s presenters, who co-chairs the event with Dr. DeSarbo and works at ED-180. In addition to the professionals, there are also presentations from patients and families who have suffered and are recovered or are undergoing recovery. “Listening to these life stories is as important as any of the lectures, and is inspirational to those fighting for recovery,” says Dr. DeSarbo.

Some of the topics to be discussed at this year’s conference are the difference between “disordered eating” and an eating disorder; the psychology of the eating-disordered mind; distinguishing binge eating, overeating, compulsive eating, and emotional eating; the role of nutrition when eating and recovering from an ED; fighting for your rights with insurance and financing treatment; and so much more.

ED-180 was created by Dr. DeSarbo because there were few options for patients who needed a higher level of care than regular outpatient treatment or needed step-down programs from inpatient residential or hospital programs. ED-180 was created out of a need to fill this void.

After being in a treatment inpatient center, recovery from eating disorders is far from over; most people don’t realize that the hard part has really just begun. At a center, the patient’s psychological, medical, and nutritional needs are taken care of. It is a safe environment and largely stress-free. When patients are ready to leave the center, they are rarely prepared to go from 24/7 treatment to living alone and seeing a couple of doctors only several times a week. Most patients need a “next step”; hence, step-down programs. An example would be living in an apartment with other patients as well as a helper/nurse/companion, while going to high-level day-treatment centers (like Monte Nido or ED-180) from perhaps 8 a.m. to 6 p.m. each day. Or a discharged patient might live alone but go to a center for five to seven days a week for a large part of each day.

Dr. DeSarbo explains: “What sets an ED-180 program apart from many others is that ED-180 recognizes that an eating disorder is first and foremost a brain-based medical condition with psychological underpinnings, expressed through food and body-image control. ED-180 staff has constant education and lectures about neuroscience and how it relates to therapy and treatment protocols.” Dr. DeSarbo stresses that ED-180 has one of the best in-house continuing-education programs.

Dr. DeSarbo has plans to intervene in the void being created by insurance coverage, affordable treatment, and quality care. The ED-180 program is now being developed into a more affordable program for treatment throughout the country. “The growing gap in cost and coverage for treatment and availability of expert treatment is a major problem, and our program is dedicated to changing the situation,” explains Dr. DeSarbo. His lofty dream is to distribute the ED-180 program and treatment model throughout the country beginning in 2017.

I recall being at a treatment center with my parents for an interview, to make sure the place was a good fit. A young woman came over to my mother and told her how lucky I was to have her, as she saw the loving interaction between my mom and me. She saw the caring, support, concern, and interest my parents felt for me, and she felt the need to tell my mom that I was fortunate, blessed–because she was all alone, she had no one.

No one should have to suffer alone, lacking support or someone who cares. It is our obligation to try to be there for people, to be a listening ear, to help with decisions if asked. And one way we can do this is by attending the 2016 eating-disorders conference. There will be people there who are victims of insidious eating-disorder illnesses, along with their families. It is not just treatment centers that help a person recover–it is the support, the helping hand, the love of people who care. Don’t just read this and sigh with sadness; please take action. There is so much to learn about how to help people with eating disorders, and you can learn how to save a life.

The month of Adar is a time of joy and miracles. Let’s try to bring some of that joy into the lives of those suffering from eating disorders.

For more information and to register for this free, crucially important conference, please visit www.EatingDisorderConference.com.

Also, register soon for The Walk, a dusk-till-dawn walk in New York City for suicide prevention on June 4. According to information provided by the program, every year, suicide claims more lives than war, murder, and natural disasters combined, and yet suicide prevention doesn’t get anywhere near the funding given to other leading causes of death. “It’s up to ‘walkers’ like us to make a difference. Together we can change the conversation about mental health and put a stop to this tragic loss of life.” More information to follow.

Note: I’m writing these articles because I hope my story will provide encouragement, hope, and information that will be helpful to others. Please understand, however, that I cannot offer medical advice or referrals to treatment.

Michele Herenstein is a freelance journalist and can be reached at michelesherenstein@hotmail.com.

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