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Type 1 personalities

Joslin’s study of 50-year diabetes patients indicates what has made them survive, thrive

Amy S. Schneider (checking an insulin pump reading at her Newton home) said her diabetes has “made me much more aware, healthier, knowing about things that are important to know.’’ Amy S. Schneider (checking an insulin pump reading at her Newton home) said her diabetes has “made me much more aware, healthier, knowing about things that are important to know.’’ (Essdras M Suarez/Globe Staff)
By Karen Weintraub
Globe Correspondent / May 30, 2011

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When Kathryn Ham and Amy S. Schneider were diagnosed with diabetes as children decades ago, patients were routinely told the disease would rob them of their fertility and ravage their eyes, kidneys, and nerves. They would be dead within 15-20 years, doctors told devastated parents.

Both women defied the predictions.

Over a bowl of vegetable soup recently, Schneider, now 55, credited her success to “good doctoring, good parenting, good health, and good luck.’’

Disciplined living made the difference for Ham, 82, though she admits it’s sometimes “a pain in the neck’’ to check her blood sugar four times every day, inject insulin, and eat a careful diet.

Now, the Joslin Diabetes Center in Boston is studying 650 long-term type 1 diabetes survivors — including Ham, diagnosed 74 years ago, and Schneider, diagnosed a half-century ago — to better understand how they have fared so well for so long.

The lesson is: “Diabetes is a controllable disease,’’ said Dr. George L. King, Joslin’s research director. “With the right constellation of proactive activity, you can manage it.’’

The research project — which includes studies of genetics, proteins, family history, and stem cells — marks the first time such a large group of survivors has been examined with records going back decades.

By studying these patients at every level from cells to psychology, the Joslin researchers hope they will learn lessons applicable to others with type 1 diabetes, an autoimmune disorder that usually starts in childhood — it used to be called juvenile diabetes — and attacks the pancreatic cells that make insulin. (The research will not have as much to offer people with type 2 diabetes, which is generally associated with obesity and aging, scientists said.)

This week, the Joslin will honor its “medalists’’ — patients who have lived for more than 50 years with type 1 diabetes — most of whom are participating in the research. The 100 or so medalists planning to attend the two-day festivities, including Ham and Schneider, will have a lot in common.

Three things typically distinguish those who survived diabetes from those who didn’t, King said: Survivors learned diabetes management at a young age and stuck with it; they had long-lived parents; and they’re very active — they particularly love to dance.

Ham and Schneider both laughed at that one. They didn’t realize that their passions were shared by so many. Ham takes weekly aerobics classes and likes to dance around the kitchen when the music is right. Schneider gave up belly dancing a few years ago, but still goes ballroom dancing once a month with her husband and friends.

Both have long been active in other ways, too. Ham, now of Brookline but a native of Canada, remains devoted to the sport of curling, furiously sweeping the ice to coax her team’s stone further than her opponents’.

Schneider, of Newton, plays her Wii Fit almost every morning and loves bike riding. She’s kayaked, traveled to the South Pacific, and gone swimming under waterfalls. “I don’t feel limited,’’ she said. Both Schneider and Ham had mothers who lived long — though Schneider’s father died when she was 5, just two months after her diabetes diagnosis.

And their mothers took excellent care of them, both women said, at a time when diabetes care was far more difficult than it is today. “It’s my mother who deserves the medal,’’ Schneider said.

To test blood sugar back then, mothers had to boil something called Benedict’s solution and pour it into a test tube along with some of the child’s urine. If the solution turned a clear blue, that was good news; a milky orange or red meant that even with the insulin, the blood sugar was out of control.

Schneider said her mother also taught her to view diabetes as a fact of life, rather than an impediment.

“I had a family dynamic of ‘It happens, get through it,’ ’’ she said.

That, too, is a common thread among the long-term survivors of diabetes: They don’t seem too fazed by their disease.

Living with diabetes for 50 or more years “takes a certain amount of pioneering spirit and a can-do approach to life,’’ said Dr. Jennifer K. Sun, an ophthalmologist at the Joslin. One of her patients had to make his own insulin when he was a missionary; he’d buy a local pig and isolate insulin from its pancreas, she said.

About a third of the medalists seem to have an extra protective boost against the disease. The goal of the research is to figure out what that boost is, and see if it can be used to help others with the disease.

“Whatever is protecting them is pretty strong,’’ King said. “If we could identify for sure what [those factors] are, then we know it could be effective for the rest of the population.’’

Researchers in the Joslin study are looking at a range of measures from its long-term survivors, from demographics to state of mind, pancreatic cells, and vision loss.

Investigator Dr. Rohit Kulkarni, on the faculty of Harvard Medical School and the Harvard Stem Cell Institute, is taking skin cells from these patients and turning them into adult stem cells. From there, he said, he wants to transform the cells into kidney, heart, eye, immune, and insulin-producing beta cells to see what distinguishes these people’s cells from other patients’.

In one of the biggest surprises of the research so far, many medalists were found to still be making small amounts of insulin. This suggests that there might be a way to boost insulin production or reduce the autoimmune reaction that is stifling it, King said, and is an area for future research.

The Joslin researchers are also examining the cadavers of long-time survivors who donated their bodies to the Joslin, accessing parts of the body that could not be studied during life.

And that’s something else that Joslin and other researchers said about patients with type 1 diabetes: They’re incredibly generous when it comes to participating in research.

Schneider and Ham both say the self-discipline they learned from having diabetes has helped them age better than they might have otherwise.

“Without the diabetes, I probably would have put on a lot of weight,’’ said Ham, whose 5-foot frame weighs in at just 100 pounds.

“I think it’s made me much more aware, healthier, knowing about things that are important to know,’’ said Schneider, who is trim and energetic.

A software engineer at Boston University, Schneider said her diabetes has prevented her from doing only one thing she really wanted to do: flying solo. She took enough lessons to qualify, she said, but wasn’t allowed to pilot a plane by herself, because of concerns she could pass out from low blood sugar.

“I had an absolute fit about that,’’ she said.

Despite the predictions of difficulties bearing children, both women are mothers of healthy, diabetes-free children. Schneider, who has two grown children, said her Joslin doctor at the time, Dr. Priscilla White, moved in for several months while she was pregnant, in an era when half of all pregnancies in diabetic women ended in miscarriage.

Ham, who was also treated by White, has three daughters — the youngest of whom she named Joslin after the clinic that has helped her take such good care of herself all these years.

Schneider is equally grateful, but wants one more thing from the Joslin. As proud as she is of her 50-year medal, Schneider says she really wants a 100-year one. And it had better be nice, she said, chuckling.

Karen Weintraub can be reached at karen@karenweintraub.com.

What makes a survivor

There are common themes among the 650 people in the Joslin Diabetes Center’s “medalists’’ study of patients who have lived with type 1 diabetes for a half-century or longer. According to Dr. George L. King, Joslin’s research director, these survivors are typically:

* of Northern European ancestry, which tends to correlate with high socioeconomic status, high levels of education, and good health care and nutrition.

* nonsmokers.

* physically active.

* children of parents who took control of their diabetes when they were very young, and they continue to do a good job of keeping their blood sugars low and stable.

* children of parents who were long-lived — on average, 76-77 years.

* matter-of-fact about their diabetes: They see it as an annoyance, but not a curse.

* willing to participate in medical research about type 1 diabetes.

* have a pancreas that has continued to make insulin-producing beta cells.

KAREN WEINTRAUB

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