What Patients Say, What Doctors Hear

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…is the perfect title for this sixth book by Dr. Danielle Ofri, internist at NYC’s Bellevue Hospital, author and regular contributor to the New York Times.

I’ve read all of Ofri’s books and enjoyed the candor, conversational tone and heart with which she writes. She is a voice and witness for both patients and providers trying to do better with this fragile union.

I wrote a full book review on the Huffington Post.

Joslin Medalists tell us how they create health

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I stole this photo from my Facebook friend, Richard Vaughn. He posted it on Facebook along with a lovely and lengthy write-up about what’s been learned by studying people who’ve successfully lived with type 1 diabetes more than 50 years.

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Richard, above, has had type 1 diabetes for 71 of his 76 years. He’s also become a wonderful advocate for the community.

If you’ve had type 1 diabetes for more than 25 years, and you notify the Joslin clinic, you will be sent a certificate. For 50 years or more you get a very special award – and the opportunity to participate in the Joslin Medal study. This is a fabulous study because it’s looking at what people do, and what their bodies do, to create health; they are researching how people with type 1 diabetes manage to live a long life to share with all of us.

I’m going to pull out from Richard’s post pretty much the answer they have thus far found to that question:

Dr. George L. King, the head of the Joslin Medalist Study in Boston, is working with more than 800 people in the Joslin Diabetes Medalist program —people who have been awarded medals for living with type 1 diabetes for 50, even 75 years —to uncover how they have managed to avoid many diabetic complications through the decades.

“They are very interesting people,” King says about his study group. “Some of them built their own glucose meters in the 1960s and 70s, before they were widely available to the public.” Aside from being avid do it yourselfers, King found other shared traits of those who have minimized the complications from diabetes, despite living with the condition for many years.

After discounting genetic factors, King’s research so far reveals that most of the Medalists exercise regularly. They are also very careful with their diets. But, more than this, King noted another shared trait that, although fairly abstract, is very important. “They are very good advocates for themselves,” King says of his subjects. “The are always on the lookout for new treatments. They are definitely a proactive group. They’re not sitting on the sidelines waiting for something to be done for them. They’ll do it for themselves first, if they have to.”

King, and other researchers, also discovered that HDL levels, the so-called “good cholesterol,” is high in Medalists without complications.” We are looking into that,” King says about the implications of the HDL levels.

By examining the Medalists King hopes to uncover the specific, if not the actual molecular ways in which they are protected from complications. Is it lifestyle? Genetics? Life choices? Or, is it something else? “The hope is we look at humans who are protected, then see why they’re protected, and come up with answers about lifestyle,” King says. “Then, by looking at their tissue and biochemistry (after death) we can perhaps develop medications to simulate the biochemistry that protected them.”

On that front, King says they have discovered a way that naturally-produced human insulin prevents arteriosclerosis. “Can we design an insulin to prevent arteriosclerosis?” King says. “I think this may be possible in the next five years.” Because up to 30 percent of people with type 2 diabetes use insulin, such a breakthrough would be good news for more than just for type 1 diabetics, he points out.

Meanwhile, as researchers like King work to understand the factors that protect some people from the complications caused by diabetes, and until the development, and testing of medications as a result of those findings come to market, there are things diabetics can do to help themselves avoid retinopathy, neuropathy, kidney disease and cardiovascular disease.

“Don’t smoke, watch your diet, and exercise,” King advises. “Also, advocate for yourself. Be proactive. That’s the main trait of the Medalists—they stick up for themselves.”

All good advice and nice to see a study looking for how people do well so we can share that with others.