Those of us living with diabetes can have quite a warped relationship with food, because it's so key to blood sugar control and at same time so essential and tempting; we've written about the serious issue of diabetes-specific eating disordersin the past. 

And we've long followed the work of Erin Akers, a longtime type 1, who has been advocating on this topic for more than a decade now. She helped create the non-profit Diabulimia Helpline (DBH) offering a 24-hour hotline at (425) 985-3635, that provides immediate help finding the right treatment center, doctor, and/or therapist, and even walks clients or their loved ones through the complicated world of insurance coverage. Erin also established an active Facebook support group that's touched so many lives.

As culmination of this work, she hosted the 1st everInternational Conference on Diabetes and Eating Disorders on Nov. 9-13 in New Orleans. Today, we're happy to welcome Erin to share her account of this unique and much-needed event and her plans going into 2019.

 

Realizing the Dream of a Diabulimia Conference, by Erin Akers

A scream rang out across the Astor Crowne Plaza New Orleans’ extravagantly ordained main conference room. The sponsors, still setting up their tables for the health fair, all stopped and turned to make sure no emergency had occurred. But the scream was not one of distress or fear, rather of elation and love. Two members of the Diabulimia Awareness Facebook support group, which became the basis for the non-profit Diabulimia Helpline (DBH), had spotted each other from across the room -- and couldn't contain their excitement. Connections made in this group that has helped so many people find their strength to reach recovery were part of what we were celebrating.

It's been nearly a decade now since the establishment of this support group, which became the bedrock for many relationships that in turn became the backbone of recovery. Strange, since so many of us only knew each other from profile pictures, yet we embraced as long-lost friends.

DBH did a lot of great things this year, including a presentation at the AADE (American Association of Diabetes Educators) annual conference and helping install diabetes and eating disorder-specific programming at several leading treatment centers. The Helpline itself does good every single day: On average we get about 1-2 calls a day on the hotline. Some days we’ll get none and then the next day it’s like a downpour with 5 calls. It usually averages out to 30 calls a month. These calls vary from people with diabetes who need new providers that actually have experience with both diabetes and eating disorders to healthcare providers looking for resources or training.

I'm proud of all that. But this new dedicated Helpline conference in New Orleans (hashtag #DBHcon18) was our masterpiece, and more than that, it was my personal dream, that'd I'd been envisioning since the Diabulimia Helpline was first founded those 10 years ago.

There were 100 attendees -- 60 medical professionals and 40 patient/family members. The mix on the patient side was about 90% patients to 10% family members. Although this conference did have a session for medical professionals on identifying this behavior in both men and women, the Patient Track -- both speakers and attendees -- were primarily women this year. We already have at least one male slated to speak at next year's conference and several male clients very excited to attend as well.

 

Training Professionals, Connecting Patients

#DMHcon18 was a two-track event: one offering CE credit for healthcare professionals in both the diabetes and mental health fields, and one just for patients. The conference theme, “Dream, Believe and Hope -- what we can do when we come together” mimics DBH’s own motto “Dream, Believe, Hope," with a theme for each of the three days.

The Patient Track focused on fostering an opportunity for people who have diabetes and an eating disorder to come together in a warm, supportive environment to learn from experts and talk with peers about the things few others understand. “For myself the conference was absolutely life-changing! I felt such comfort in knowing that I am not alone.  The friendships created, the real emotions shared and the entire experience in general couldn’t have been better,” said Vanessa Dominguez, a twelve-year diabetes veteran who struggled with an eating disorder for several years and attended the conference with her husband, Jesus, who spoke on the family panel.

Vanessa and Jesus came all the way from California to be at thsi first conference in New Orleans.

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The venue was meticulously chosen, partially for the patio that overlooked the famous Canal Street that attendees could access from our main banquet room throughout the conference (which you can bet we took advantage of!) If we were going to host our first conference in New Orleans, we were going to enjoy it! People flew in from all over to be there. Speakers on both tracks came from as far away as New Zealand, Sweden, Great Britain, and the farthest traveler from Perth, Australia, journeying almost 11,000 miles for a grand total of 27 hours of travel time. But at least she felt the trip was worth it. "Attending the inaugural diabetes and eating disorder conference was a fantastic opportunity to learn from, liaise with and collaborate with leading researchers, clinicians and individuals with lived experiences in the one space. The conference was informative and allowed me to hear about new and upcoming research whilst identifying current research gaps," said Australian doctoral fellow Emanuala Aria.  

We felt incredibly honored to have the keynote given by Dr. Ann Goebel-Fabbri, PhD, former psychologist at Joslin Diabetes Center, professor at Harvard University and author of Prevention and Recovery from Eating Disorders in Type 1 Diabetes: Injecting Hope. Goebel-Fabbri is considered one of the foremost experts in the field of diabetes and eating disorders.

We moved the night along into a cocktail mixer for both tracks to really get the patients and providers talking, and hopefully truly listening, to one another. Qiana Drew, a woman who has lived with T1D for 18 years and suffered with an eating disorder for many years and is now in recovery, shared a little of her own story, then sang the Katy Perry song, Rise -- a moment that left over half the room with tears in their eyes. “As a singer, it’s important for me to use my voice to uplift people and ultimately inspire them. I felt blessed to have had the opportunity to be that for those in attendance as I sang the song Rise which details how we all must rise, like the day, like the waves, unafraid, again and again for ourselves because we are so much more than the struggles we face... we are overcomers,” Drew sais.

To further entrench the idea that we must work together if we are to ever decrease the staggering number of people with co-occurring diabetes and eating disorders, Saturday opened with morning yoga for both healthcare professionals and patients led by Sarah MacLeod. A trained holistic health coach and yogi, Sarah is a huge advocate in the diabetes sphere as a DiabetesSisters PODS leader and a chapter leader for Type One Run in the Boston area. Sarah also gave a presentation in our patient track on Sunday titled, "Mindfulness: Infusing Awareness, Intention and Presence into Your Journey." For being one of the last sessions of the conference, I was pleasantly surprised to see all the attendees fully present and engaged with all of the exercises Sarah guided them through.

I have been to dozens of conferences in my career, but never in my life have I seen a group of people so excited to begin and learn as the group that sat before me at breakfast Saturday morning. The healthcare professionals started off the day with a presentation from Dr. Ovidio Bermudez, Medical Director and Chief Clinical Education Officer at Eating Recovery Center in Denver, CO. Bermudez is often considered the godfather of diabulimia treatment because his protocols for slow insulin reintroduction (to minimize risk of complications) are used at most treatment centers. His talk, "ED-DMT1 (Eating Disorder-Diabetes Mellitus Type 1) and Other Emerging Eating Pathologies: What and Why?" covered the often-overlooked forms of an eating disorder, particularly those co-morbid with diabetes.

Other highlights from the Healthcare Professional Track included a presentation by doctoral fellow, Emanuala Aria’s, research on "Gender Differences in Disordered Eating Behaviors and Body Dissatisfaction among Adolescents with Type 1 Diabetes" was groundbreaking. Also rocking the research world was Dr. Rhonda Merwin’s work on using "ACT to Reduce Eating Disorders Among Individuals with Type 1 Diabetes." It had all the healthcare professionals talking long after the session ended, in all the best ways.

The Saturday Patient Track started with a peer-facilitated real life support group, which was one of the most well-received sessions of the whole conference. “It was Inspiring to hear from people who have completely recovered, and felt nice to know that I'm not alone, I'm not the only person trying. I think it was the best part because it was more like a live support group, which just isn't possible where I live,” said Deioan Owen, an attendee at the conference and a 15-year member of the T1D club.

Also on the patient side, dietitian Nikki Estep’s presentation on "Finding Your Food Intuition" and Allison Marek’s talk, "Shame Resilience & Diabetes," left patients stunned and awed by the beauty and magnitude of the session’s depth. “To be in a room with my peers was special and it gave me closure as we all talked about the guilt and shame that comes with the disorder, even after you’ve recovered from the abusive / dangerous behavior associated with it,” Drew said.

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Photo by Sarah MacLeod. Courtesy of Diabulimia Helpline

But the sessions that really stole the show on the Patient Track were the two breakout panels. The first was a family panel comprised of a husband, a brother and two moms. It was one of the most honest, vulnerable and sincere moments at a conference I’ve ever seen. When the aforementioned Jesus described finding his wife so weak that he had to carry her, there wasn’t a dry eye in the house. And you could hear a pin drop when Alek, my own brother, talked about coming into the hospital room shortly after I flatlined and was brought back through CPR. Jesus said of his experience on the panel, “Attending the conference as a partner it was inspiring to see people fighting the same conditions as my wife and thriving. It also made me feel at home because I was surrounded by people fighting the same struggles as her and that gave me better understanding of what she goes through daily.  I am honored and grateful to have been able to speak at the conference. I look forward to attending again next year!”

The second standout session was a pregnancy panel led by three women, who all had very different experiences with their pregnancies and diabetes. The session proved so intimate the participants pulled chairs into a circle and just talked in a small group. The hour was so cathartic for all the women involved that when the session was over, they requested extra time to finish some of the more sensitive issues. “Speaking at this conference, talking about my experiences with those still working towards recovery, it really nourished my soul and strengthened my personal resolve to keep moving forward every day,” said Alison E. Sullivan, a mom of three who spoke on the pregnancy panel about what it means to have a baby, relapse, recover and keep moving forward.

 

Spreading Hope on a Tough Topic

As anyone who's suffered an eating disorder knows, it can feel like a dark whole in which one is trapped all alone -- like at the bottom of a well -- trying to dig yourself out against all odds. 

Thus, the theme for Sunday was HOPE. So we spread a little hope the best way we knew how, with some surprise awards for individuals who have done exceptional work in this area to help all affected. The first award went out to a patient who had dedicated herself and her recovery to making the world better for other people with diabetes and diabulimia. The Diabulimia Helpline 2018 Patient Advocacy Award was presented to the above-mentioned Alison E. Sullivan, a nurse who is highly involved in the Diabetes Online Community and who promotes outreach and education programs for people with both type 1 and type 2 diabetes. She especially focuses on getting education to people in lower income neighborhoods where resources are scarce. Our second award, the Diabulimia Helpline 2018 Innovation in Research Award, was presented to Australian grad student Emanuala Aria.

Regardless of which track they were on, all in attendance were captivated by the inaugural conference and the fusion of patient and professional perspective into one event. “The Diabulimia Conference experience completely exceeded my expectations and blew me away. The speakers including patients, loved ones, and healthcare professionals, was a brilliant combination of education and inspiration," said Lindsay Montalbano, an attendee and conference volunteer. "As a patient living with type 1 diabetes and a member of the diabulimia community, finally being able to meet, connect, and share vulnerability and struggles with other members from our international community, it was beyond special. I absolutely cannot wait to see what next year’s conference will bring!”

Truly nothing feels as good as watching the connections made at the conference flourish. Professionals exchange emails and phone numbers as they make plans to start innovative new projects. Patients snap pictures as they embrace and refuse to let go, still in disbelief they’re actually holding a friend from so far away. Now, almost a month after the conference, I check in with an attendee to see how she’s holding up, knowing her recovery has been shaky as of late. Her response: “I’m doing so much better! The conference truly was so inspiring and therapeutic for me and I’ve kept so many key points and things people said in mind to keep pushing in my recovery. I really can’t wait for next year! I wish it was tomorrow!!

Nothing feels better in my soul than hearing those words, knowing that a participant’s road to recovery is slowly solidifying under her feet. Every stone, every tomorrow, every step you take in that journey is a big one, so we’re happy to be there with you through it.

For next year, we look forward to welcoming our community to the SECOND Conference on Diabetes and Eating Disorders on Sept 20-22, 2019, in San Diego, CA, with a whole new group of speakers -- but the same energy, compassion and understanding. We hope to see some of you there; it’s sure to be even more life-changing than the first!

 

Thank you for creating this incredible support community around this important topic, Erin! And of course thank you for sharing the details here at the 'Mine.