Diabetes Forecast

Steve Edelman Takes Control

The endocrinologist makes putting patients first his passion

By Tracey Neithercott ,
Get to Know: Steve Edelman
The PATIENT: Diagnosed at 15, Edelman has had type 1 diabetes for 41 years.
The DOCTOR: Edelman is the founder and director of Taking Control of Your Diabetes, professor of medicine at the University of California–San Diego, and an endocrinologist at the VA San Diego Healthcare System.
The FATHER: Edelman has two daughters of college age.
The FRIEND: To stay in shape, Edelman and pals hop on their bikes and ride for 50 or 60 miles at a time.

Steve Edelman stood over the cold body. Compared with the rest of the cadavers in the anatomy lab, this person was young, only 25. Edelman paused, scalpel in hand. So young, and yet the man had already died of complications of uncontrolled diabetes.

"Here I am, dissecting someone who was only a little older than I was," says Edelman, now a 56-year-old endocrinologist, remembering the first cadaver he encountered in medical school. "I even have a couple tears right now because it affected me. It was tough."

As was the rest of med school, a time when Edelman's type 1 diabetes was uncontrolled and complications were starting to arise. "I still remember the kidney professor said that 50 percent of type 1 diabetics are dead after 20 years with the disease." Though medical school brought Edelman face to face with his own mortality, it also helped him forward his care. He studied under Mayer Davidson, MD, who later became president of the American Diabetes Association, in the diabetes clinic of the University of California–Los Angeles. Working in the clinic and getting care there, Edelman leveled out his blood glucose. By graduation time, Edelman knew that he wanted to help others control diabetes.

Learn More
For more information about the Taking Control of Your Diabetes online series Extreme Diabetes Makeover, click HERE .

The Greatest Passion
Edelman's talking from his office in Del Mar, Calif., during the rare hour he has away from the clinic, his classes at the University of California–San Diego, and Taking Control of Your Diabetes (TCOYD), an organization he founded in 1995 to educate people with diabetes.

The inspiration behind TCOYD was Edelman's experience as a newly diagnosed teen. He attended a diabetes education course, but the information—thrown at him before he could fully wrap his head around having a chronic disease—didn't stick. "I honestly did not know that if your blood sugar was high, it could lead to complications," he says. "They probably told me that, but I wasn't in the right state of mind."

Without further guidance from his parents or doctor (who gave him the A-OK despite high blood glucose readings), Edelman stalled in his management. By the time he entered medical school, retinopathy threatened his eyes and signs of kidney disease showed up in his urine. So when he saw that 25-year-old on his dissection table, Edelman decided to make some big changes.

"That whole experience has really defined my career," he says. "I'm a professor and I do all that teaching and work at the clinic, but what I do at Taking Control of Your Diabetes is really my passion." The goal is simple: to motivate people to take a bigger role in their own care.

This is accomplished through a dozen annual regional conferences, a public-access television show about diabetes, and Extreme Diabetes Makeover, a new online series that follows people with type 1 and type 2 as they change their lifestyle with the help of a team of diabetes experts. "We are not just making small changes," he says. "We're making huge changes in people's lives."

Origins of a Superstar
If he had it his way, Edelman would spend an hour each with patients, reviewing their numbers, answering questions, and otherwise chatting about diabetes. (Want to snag an appointment at his clinic? Prepare to wait at least eight months.) He's the kind of doctor who gives a new patient his cell phone number and then texts insulin-dosing tips based on the patient's glucose readings.

Want to attend a TCOYD conference?
Here's where you can find one in 2012:
May 19, Raleigh, N.C. Sept. 8, Missoula, Mont. Sept. 22, Des Moines, Iowa Oct. 27, San Diego, Calif. Dec. 1, Austin, Texas

It comes down to empathy and a judgment-free environment. He can still remember the confusion, rebellion, and guilt he has felt during his 41 years with the disease. Instead of labeling people "noncompliant" for not following his instructions to the letter, Edelman tries to uncover the emotion behind an action. Poor glucose control, he says, can be a result of more than apathy, such as financial, emotional, and educational barriers. "Why do people not bring in their logbooks? Because they're afraid to show the doctor," he says. "Once they get the feeling from me that I'm not going to chastise them for what they ate or anything, that's when they open up."

The idea of separating the patient from an A1C or a number on a meter inspired a well-loved TCOYD session: Edelman puts docs and patients in a room and asks them to take turns venting. Patients criticize doctors who make them sit for an hour in the waiting room, while docs complain about patients who don't take their meds. "My initial intent was to show doctors what it's like to live with diabetes," he says. "And what I didn't expect is that patients were learning about obstacles doctors face."

Humanity Exposed
Pay enough attention to his accomplishments—including the 2009 Diabetes Educator of the Year award from the ADA—and it's easy to forget that this doctor, professor, and nonprofit foundation director is really a regular guy with diabetes. Part of Edelman's charm is his willingness to share that humanness.

"I have patients come in and their A1C is better than mine, and I tell them," he says. "It motivates me." He's open about his complications: kidney disease, gastroparesis, and retinopathy that required laser surgery and now forces him to hook two monitors to his laptop in order to read.

His story proves a point: that people with diabetes are not alone. That if a leading endocrinologist—who has a firm grasp on how the human body works and reads the latest medical studies—slips up sometimes, people shouldn't be ashamed when they do the same. What's more, if Edelman can turn around his blood glucose control with the hope of preventing further complications, they can, too.

It all goes back to the body on the table in front of a young Edelman. Staring down at his possible fate, Edelman gave himself a pep talk that guides his life. "I said to myself, 'If you only have a limited time on this earth, better make the most of it.' "



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