AUGUST 2013 NATIONAL EATING DISORDERS ASSOCIATION MAKING CONNECTIONS “Aha” Moments Readers share insights on the road to recovery PLUS How Common Are Eating Disorders in Pregnancy? Abigail Easter, PhD Calling All Dads: “There’s a Ball At the Castle” Don Blackwell and Mike Polan Raising Awareness on a Navel Base Theresa Larson, DPT A Publication of NEDA’s Parent, Family & Friends Network (PFN) 2 Letter from the PFN Chair By Deborah Kreiger, Florida Hello Everyone! Day, is a unique opportunity to take In 2003, NEDA opened their arms wide strides in your journey, too. Lobbying to include parents and friends during As I pull together on Capitol Hill will forever change how their annual conference. Feeling a bit my thoughts for you view our legislative process. You nervous and very alone, my daughter this issue, I have may be only one voice, but you are one. and I gathered our courage and flew to taken the time And on this day your voice will be heard Chicago to take part in what was to be to reflect upon in tandem with others who share your life-changing for us. I encourage you to my family’s very passion to affect change for good. You will thoughtfully consider being a part of both personal journey feel empowered and hopeful as your day Lobby Day and the NEDA Conference…you with NEDA. What wraps up and these feelings will catapult will look back and be so thankful you did. began as a starting point for information you into a conference that will continue and resources when our daughter was to expand your knowledge; you will be I look forward to welcoming you in struggling has evolved into a lifetime supported, understood and nurtured, Washington D.C.! commitment of learning, sharing, and I believe you will establish a network advocating for positive change and giving that you will continue to reach out to Deborah n back to an organization and a community long after the conference has ended. How to whom we are most grateful. good you will feel cannot be overstated…. the people, the resources, the friendships The annual NEDA Conference, preceded and the ongoing lifeline of hope you will by a most important opportunity to experience is invaluable. participate in the NEDA Federal Lobby PFN Steering Committee: Lorri Antosz-Benson, California Nancy Hemendinger, New York Mike Polan, New York Deborah Kreiger, Florida (Chair) Don Blackwell, JD, Florida Phoebe Megna, Connecticut NEDA President & CEO Bob Kovarik, Chair Evelyn Attia, MD Kimberli McCallum, MD Lynn Grefe, MA Oakton, Virginia New York, New York St. Louis, Missouri Deborah Q. Belfatto, Vice Chair Ric Clark Tamara Pryor, PhD NEDA Board of Directors Summit, New Jersey Larchmont, New York Denver, Colorado The Board of Directors is composed of Lisa Ryan Burke, Treasurer Mary Curran Elizabeth Sarquis members from the corporate, medical Summit, New Jersey West Simsbury, Connecticut Minneapolis, Minnesota and philanthropic arenas, with some Phoebe Megna, Secretary Julie Finkelstein Allison Kreiger Walsh, JD also representing the constituents we Darien, Connecticut Purchase, New York Orlando, Florida serve. Karen Andonian Mary Lipton Steve Wonderlich, PhD Clyde Hill, Washington New York, New York Fargo, North Dakota NEDA Board Senior Advisors: Ovidio Bermudez, MD, Media Advisor Amy Baker Dennis, PhD, Conference Advisor Margo Maine, PhD, Advocacy Advisor Doug Bunnell, PhD, Navigators Advisor Walter Kaye, MD, Research Advisor NEDA Junior Board: Laura Serico, Chair Christopher Skarinka, Treasurer Elizabeth Sexton Lindsay Belfatto, Vice Chair Brooks Brodrick Lauren Steiner Troy Roness, Secretary Erin Hall For more information on NEDA’s Leadership Councils, please visit www.nationaleatingdisorders.org/leadership-councils 3 Editor’s Note By Susie Roman, Director of Programs Dear Readers, Making Connections provides an This issue of Making Connections, opportunity to share the challenges focusing on Aha Moments, was the We are getting more you have faced, and what you have result of a conversation among members excited by the day for learned, with other families and loved of the PFN about the many different the first ever NEDA ones of those struggling or pursuing important moments that marked Federal Lobby Day on recovery. In upcoming issues we will their families’ journey to recovery. We October 10th, which feature perspectives on the challenges hope that you find inspiration, insight will kick off the 2013 and lessons learned in dating and long- and encouragement as you read the NEDA Conference, term relationships, sources of hope and perspectives of parents, a boyfriend, October 10-12th in Washington, D.C. It is maintaining hope when it is difficult, those in recovery, a nutritionist and those such a wonderful opportunity for all of us strategies to use when fighting insurance raising awareness in the military. to build a stronger community of support denials, and of course book reviews, and learning, and we hope to meet you research summaries and more. Your Sincerely, there. We offer a NEDA Buddy program, submissions are what make this magazine Susie Roman Support and Recovery Roundtable Series, the resource that it is for families Director of Programs n and plenty of networking opportunities affected by eating disorders. Please email to enhance a great educational us at [email protected] if you are experience with connection to others interested in contributing! who share aspects of your journey. IN THIS ISSUE 2 Letter from the PFN Chair 16 Real Mannequins for Real People 3 Editor’s Note 17 STAR Program Victory in Missouri! 4 Research Summary | Recognizing the Symptoms: 18 Transforming My Struggle into a Tool for How Common Are Eating Disorders in Pregnancy? Successful Advocacy 5 A Moment of Courage 19 Fighting for Recovery in the Face of Health Insurance Denials of Care 6 Learning On the Path to Recovery 20 NEDA Conference 2013 7 What Readers Are Saying 21 Calling All Dads – “There’s A Ball At The Castle” 8 A Friday Phone Call 22 BlackStar Film Festival: Baby Steps 9 Nutrition and Eating Disorders: A Shared Journey 24 NEDA Walk Volunteer Spotlight 10 The View From the Top of the Mountain 24 NEDA Walks 2013/2014 12 Raising Eating Disorders Awareness on a Naval Base 25 Upcoming PFN Series Webinars 13 Advances in Eating Disorders Awareness in the 26 Network Spotlight Military 26 Meet the NEDA Staff! 14 This Side of the Table 27 Chat with the Helpline 15 Don’t Settle For Barely Recovered 4 Research Summary | Recognizing the Symptoms: How Common Are Eating RESEARCH Disorders in Pregnancy? By Abigail Easter, PhD, Research Associate, University College London, United Kingdom regnancy can be a crucial transitional In this study, we highlight the need for phase in a woman’s life, characterised increased recognition and awareness of Pby significant psychological and eating disorders during pregnancy and social adaptations. Physically, pregnancy the crucial need for further support for is associated with substantial and rapid women experiencing an eating disorder changes to a woman’s body shape and during this critical phase of their life. size. For women with eating disorders, the Community projects aimed at supporting bodily changes associated with pregnancy individuals with eating disorders during can give rise to unique challenges. periods of significant life changes have Many women with eating disorders find been initiated. An example of one such it difficult to discuss their illness with initiative is theTransitions Project re- healthcare professionals in antenatal cently launched by B-eat (a UK based eat- settings, and therefore remain unknown during early pregnancy, and a large pro- ing disorder charity). This project offers and unsupported during pregnancy. A portion of women experienced associated mentoring support to young people with recent in-depth study of the experiences symptoms, such as extreme weight and eating disorders, helping them to adapt of six women who had anorexia shape concerns and frequent episodes of during time of great change (i.e., leaving nervosa during pregnancy revealed binge eating. We found that 7.5% of the school and starting university or work). that pregnancy can be an unfamiliar women asked had an eating disorder (e.g. Similarily, NEDA Navigators are volunteer experience, associated with feelings of Anorexia Nervosa, Bulimia Nervosa or mentors that have experience navigating social and emotional isolation and a lack Eating Disorder Not Otherwise Specified) the complex and overwhelming systems of psychological support (Mason, Cooper during their first trimester of pregnancy, and emotions involved with the diagnosis and Turner, 2012). and almost a quarter of women (23.4%) and process of seeking help for an eating experienced weight and shape concerns at disorder. They provide informal, personal Few studies have investigated the fre- a clinically significant level. support through a difficult journey, and quency with which eating disorders are direct individuals and families to the present amongst women during pregnan- While the overall number of women professional help they need. Community cy. In general, eating disorder symptoms who had an eating disorder in the first support projects and programs like these are thought to decrease during preg- trimester of their pregnancy was lower may be beneficial to women transition- nancy (Micali, Treasure, and Simonoff, than prior to pregnancy, the proportion ing through pregnancy and into early 2007), but the risk of reoccurrence in the of women with binge eating disorder motherhood. n postnatal period is high. (BED) increased. Little is known about the association between pregnancy and BED, References: In the March edition of the European however, previous research by Cynthia Mason, Z., Cooper, M., & Turner, H. (2012). The Eating Disorder Review, we reported on a Bulik and her team in North Carolina sug- experience of pregnancy in women with a history of anorexia nervosa: An interpretive study of the prevalence of eating disorder gests that pregnancy may be associated phenomenological analysis.