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An endocrinologist uses an educational non-profit to inspire patients and other individuals with diabetes to apply knowledge to live healthier lives.
“What’s bothering you the most about your diabetes?”
– Steven Edelman, MD
If you’re a patient living with diabetes, this is the opening question you’ll hear from Dr. Steve Edelman, an endocrinologist at the University of California, San Diego (UCSD), and VA San Diego. He has been living with type 1 diabetes since age 15. As one of my attendings when I was an endocrinology fellow at UCSD, he would exhort us to ask this question, or its relative, “What’s the biggest issue you’re having with your diabetes?” He absolutely despised describing a patient as “non-compliant,” and would urge and remind all of us – fellows, residents, and medical students – to banish this term from our lexicons when presenting patients to him in the Diabetes Clinic every Tuesday morning. He role-modeled truly listening to patients, to discover the barriers they faced that hampered adherence.
“It was 1995 and I felt there wasn't enough education going directly to the people most affected by diabetes, those living with it. I wondered how I could get to them and motivate them without changing the entire medical educational system. My first model to train doctors was frustrating. Doctors can be slow-going in terms of change and stuck in their ways. So I went directly to the PWD [person with diabetes]. I've since realized you have to educate patients and physicians in parallel fashion.”1
He’s speaking about why he founded Taking Control of Your Diabetes (TCOYD), a non-profit organization with a mission of inspiring individuals with diabetes to arm themselves with and apply knowledge to live healthier lives. TCOYD offers all-day conferences and health fairs in nine cities across the nation. Each brings together numerous speakers who offer dynamic plenary talks in the morning, on topics ranging from “True Detectives: Solving Real-Life Case Scenarios of Highs and Lows,” to “Learn, Laugh, and Live Better with Diabetes.” The afternoon is filled with workshops with title such as “A Shot of Inspiration - Using Your Diagnosis to Inspire.” There is a track for type 1 and type 2. A concurrent health fair hosts a large number of exhibitors, and you can take part in a foot screening, try chair dancing, and sit in on cooking demos. I’ve been proud to serve at the “Ask a Specialist” booth, where patients and their loved ones can ask questions – any questions. I always come away proud to be able to give back, in some small way.
TCOYD holds an all-day conference for CME hours for health care professionals, that runs concurrently on the day of the patient conference and health fair. Dr. Edelman and others also present mini-series of evening lectures in San Diego throughout the year.
After the most recent conference, all faculty receive an uplifting e-mail of thanks from the TCOYD team that includes excerpts of the attendees’ evaluations. Here are some comments from the conference held in San Diego last September. I close with these, because their words say it all.
“I realized today that although I need to take responsibility for my diabetes care I don’t need to feel guilty about being diabetic. Thank you!"
“At this TCOYD conference I learned more today than I have all year about my husband’s diabetes."
“I feel ready to live!!!! My game plan has been improved and I am ready to live with hope.”
For more information, visit tcoyd.org.
1. Greenberg R. Diabetes dynamo: Dr. Steven Edelman makes a personal quest America’s health intervention. The Blog. Huffington Post. http://www.huffingtonpost.com/riva-greenberg/diabetes-dynamo-dr-steven_b_692825.html. Accessed January 9, 2016.