News and Updates
July 29, 2015
New P.O. Box for WAD!
The title says it all. Please update your records! =)
We Are Diabetes
P.O. Box 16263
Minneapolis, MN 55416
July 17, 2015
Dr. Ann E. Goebel-Fabbri is Seeking Participants for a Book About Recovery from ED-DMT1!
We are thrilled to share the news that our friend Dr. Ann is working on a book about recovery from ED-DMT1! Below is a statement from Ann on the specifics of her study, and details on the qualifications needed for those who wish to participate:
My name is Dr. Ann Goebel-Fabbri, and I am a psychologist and an Assistant Professor of Psychiatry at Harvard Medical School. My research and clinical work has focused on the issue of eating disorders and type 1 diabetes for over 15 years.
I am recruiting women who identify themselves as recovered from eating disorders in type 1 diabetes – sometimes called “Diabulimia.” My goal is to gain your insight about what you believe originally put you at risk and what helped you in your recovery. I see you as the experts, who have much to teach clinical providers about how to create more effective treatments. Your experiences and ideas will be the basis for a book on this important topic.
Participation will involve completing a brief online questionnaire and a recorded phone interview. All information will be kept strictly confidential. Once it is completed, you will receive a copy of the book (digital or paper) as my way of thanking you for generously volunteering your time.
Participants must be women who have had both type 1 diabetes and an eating disorder for at least one year each. Not all women with T1DM and eating disorders restrict insulin, but the book will focus on those who did restrict insulin as one of their eating disorder symptoms.
Defining recovery remains an ongoing discussion in the eating disorders literature. For this book, recovery will be defined as: 1) consistently taking appropriate insulin doses, 2) not engaging in rigid dieting, over-exercise, or intentionally keeping blood glucose high, 3) eating in a flexible and healthy way most of the time, and 4) not acting on eating disorder thoughts and feelings even if you still experience them.
If you have questions or are interested in participating, please contact me at email@example.com.
July 15, 2015
Diabetes Hands Foundation's Masterlab Sessions, and the Future of Diabetes Advocacy
Executive Director Asha brown shares her experiences at the 2015 Masterlab and CWD Friends For Life Conference:
This summer has been full of traveling for me, but my favorite trip/event thus far has been the Masterlab sessions at the Friends For Life conference in Orlando, Florida. I was one of the lucky recipients of the travel scholarships offered by the Diabetes Hands Foundation, through the Diabetes Advocates program. With all of the other costs that come along with running a nonprofit, as well as our big trip to present at AADE15 this August, WAD wouldn’t have had the funding to attend Friends For Life, so I am extremely grateful to the staff at the Diabetes Hands Foundation for giving myself and We Are Diabetes this incredible opportunity! The scholarship covered the costs of travel, registration, and lodging while at the Masterlab/FFL conference. That being said, the following views and opinions are my own.
The main concept I felt I needed to share after participating in the Masterlab sessions was that there is a collective agreement among diabetes advocates that if Type 1’s and Type 2’s continue to bicker, fight, and point fingers at each other, nothing is going to change. As a diabetes community there is still a very strong (and sometimes aggressive) divide between those who live with T1D and those who live with T2D. Staying “on our side of the playground” isn’t working, and unless we can work together, we’ll never see the changes we all want, need and deserve. In order for us to see progression toward getting healthcare related bills to pass, and to see true changes in how the healthcare industry is educated on diabetes, we must stand united if we want our voices to be heard. [continue reading]
June 30, 2015
Follow us on Twitter next week at the Masterlab Sessions!
Founder and Executive Director Asha Brown will be attending the Diabetes Advocates Masterlab, conducted at the Friends For Life Conference in Orlando, Florida. Make sure you're following us on Twitter so you can hear all about it!
June 16, 2015
Duke University Study on T1D and Disordered Eating
Duke University currently has an online questionnaire that is part of a study on ED-DMT1. Please consider taking some time to share your voice, and your experiences!
June 10, 2015
Dr. Denise Faustman Ready for Next Phase of Diabetes Vaccine Research
A phase II clinical trial testing the ability of the generic vaccine bacillus Calmette-Guérin (BCG) to reverse advanced type 1 diabetes has received approval from the FDA! The approval of this trial, which will shortly begin enrolling qualified patients, was announced at the 75th Scientific Sessions of the American Diabetes Association (ADA) by Denise Faustman, MD, PhD, director of the Massachusetts General Hospital (MGH) Immunobiology Laboratory and principal investigator of the study.
The five-year trial will investigate whether repeat BCG vaccination can clinically improve type 1 diabetes in adults between 18 and 60 years of age who have small but still detectable levels of insulin secretion from the pancreas. We highly recommend that all our T1D friends know the facts about this exciting trial. This is indeed very exciting news, but it's important to understand that this is only the beginning of this trial, and we are at least a decade away from truly understanding the results from phase II. We hope that those in our community who are struggling with ED-DMT1 understand that although this clinical trial does indeed offer more promise that any of the other ridiculous "cure" claims we've all read about (and that every person we know sends us a link to), one has to be alive and healthy to potentially be a part of whatever is next in Dr. Faustman's tireless dedication to finding us a cure.
If you're interested in learning more about Dr. Faustman, and would like to recieve updates on the Phase II Trail visit faustmanlab.org.
May 18, 2015
The "Double Life" of Bulimia Nervosa: A Patients' Perspective
We came across this article recently and wanted to share it here with our community. Many of our clients have not only struggled with insulin omission, but with bulimia as well. Both these types of "purging" have a great deal of shame and stigma attached to them. This article offers insight and wonderful perspective on the struggles a person with bulimia may face.
May 06, 2015
Congratulations Erin Williams!
We Are Diabetes Co-Founder and Client-Care Coordinator Erin Williams has just completed her LPN degree! She graduates this week, and plans to move forward in pursuing her RN degree later this Fall. We are so proud of her hard work and determination!
April 28, 2015
The Eating Disorders Information Gateway
We are excited to share a great new resource with you! The Eating Disorders Information Gateway is a resource offered by the Eating Recovery Center Foundation that provides a single portal through which the eating disorders community can access a variety of materials to advance public understanding of eating disorders.
The Eating Recovery Center Foundation, a 501(c)(3) nonprofit, was established in 2012 to be a national eating disorder resource for patients, families, caregivers and treating professionals. As one of its first major efforts, the Foundation launched the Eating Disorders Information Gateway in summer of 2014. The Foundation will also be supporting cutting-edge eating disorder research and treatment scholarships. To learn more about the Foundation and its important work, please visit www.EatingRecoveryCenter.com/Foundation.
April 08, 2015
The Lingering Shadow: Life after an Eating Disorder
Written by Amy Gabbert
"There is nothing to writing. All you do is sit down at a typewriter and bleed." - Ernest Hemingway
I’m at the optometrist clinic where I work as a technician about to get my eyes examined. I go into my own chart and input my health history; I don’t want my co-workers to see it all, even though I did purposely omit my psychiatric history. I put in the latest information about my A1c and most recent blood sugar (high, of course. It seems to be a universal law that when you’re going to the doctor and you know they’ll ask what your last blood sugar was, it’s going to be high and you'll be subjected to a lecture). My co-worker comes in to check my vision and complete the work-up before I see the doctor. I’m nervous about her seeing my diabetes information. She doesn't notice the A1c and breezes over the work-up. The doctor then comes in and skims over my chart. My stomach turns. I hate to think what she thinks about me, about my lack of control over my disease, my high A1c. She doesn't say anything, just completes the exam. After she’s through, my co-worker goes over some charting information I’m not familiar with. She talks about never clicking “uncontrolled” for diabetic patients, “even when they’re A1c is like, eight,” obviously a number she finds deplorable. I say, “an A1c of eight isn’t terrible,” to which she replies, “well, what’s yours?” She scrolls up to look at what I reported and I say, “Oh, let’s not,” and she closes my chart and says, “well, technically I was the technician who worked with you so I can look at your chart whenever I want.” I know she’s joking, but it doesn't stop me from feeling paranoid and fearful.
I'm a private person. I don't divulge intimate details to many. Even the people closest to me typically have to work to get me to open up. One of the personal topics I am most reluctant to reveal is my experience with an eating disorder. Only my immediate family and a handful of friends know about my struggles. There can be awkward questions from people unaware of my illness about what I was doing when I was sick with an eating disorder. I wasn't in college, I didn't have a job; treatment was a full-time occupation for me at the time. I've gotten quite good at glossing over those years and stretching the truth so I can avoid talking about my struggles. I also dodge the questions about my diabetes complications; people seem incredulous that I'm so young and have such health problems.
Even though I am careful about what I disclose to people, I worry that everyone knows about my eating disorder. Sometimes I think I'm being too transparent when I talk about mental illness or weight discrimination (in a general way, of course, as not to implicate myself) and everyone knows about my eating disorder. When I think about people finding out my secret past with an eating disorder, I am paralyzed with fear and anxiety. I practice what I would say if I was ever put in an awkward situation where someone unexpectedly brought that up. I have thought of responses to every situation imaginable. [continue reading]
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