Solving the Mysteries of the Diabetes Medalists
Tuesday, June 07, 2011
“My parents were told I would die in my early twenties,” said one woman diagnosed with type 1 diabetes on her eighth birthday. “They decided not to tell me that until my early fifties.”
Such comments were common among the more than 100 Joslin 50-Year Medalists who gathered at Joslin last weekend along with family and friends.
Sharing their stories about living with the disease for many decades, the veterans also heard updates on research about their unusual medical characteristics.
The Joslin medal originally was given as recognition for surviving for many years with the disease, in which the body attacks its own cells that produce insulin. Over time, however, Joslin scientists spotted unusual and positive health trends among the Medalists. That led to the launch of the Medalist Study in 2005.
“You’re a very special group,” Hillary Keenan, Ph.D., co-principal investigator for the study, told the attending Medalists, family and friends, drawn from all around the U.S. and several other countries.
For one thing, “you can consider yourself lucky that you’re here,” joked George King, M.D., co-principal investigator, Joslin’s chief scientific officer and Professor of Medicine at Harvard Medical School.
While no cure has been found for type 1 diabetes, survival rates have soared and complications have diminished over the past half century as the tools for managing the disease have become much more powerful and friendly.
But the story was different before 1961. A Joslin study in 1981 found that, among people diagnosed with the condition between 1939 and 1959, only 48% of women and 34% of men were expected to live to age 55.
Beyond their longevity, however, this intensively studied group of survivors is unusually free of many of the complications that often plague people who have diabetes for so long.
An analysis of 351 participants published in the April issue of Diabetes Care showed that 43% are free from advanced diabetic eye complications, 87% from kidney disease, 39% from nerve disease and 52% from cardiovascular disease.
Even more dramatically, the study has firmly demonstrated that some Medalists still have cells actively producing insulin, decades after the autoimmune attack that triggers the disease and has been thought to wipe out all such cells.
A study published in Diabetes last August demonstrated that many in this group show production of c-peptides (a marker of insulin production), blood glucose levels that rise less after a meal than would be expected in the absence of insulin, and signs of autoimmune attack. More directly, insulin-containing cells have been found in every one of the 19 pancreases willed by Medalists to the program, Keenan said.
One impetus for this line of inquiry came from an insight by Elizabeth Saalfeld, who attended last weekend’s meeting. After living with diabetes for almost 60 years. Mrs. Saalfeld realized that her insulin requirements sometimes were so low that she believed her body was still making the hormone. She mentioned her observation to Dr. King in 2004. Follow-up lab analyses suggested that she was right.
The Medalist Study now draws together investigators across Joslin to analyze genetic or other factors that may be protecting this cohort. So far, the program has examined 680 individuals, with support from the Juvenile Diabetes Research Foundation and the National Institutes of Health.
“We are on the cusp of identifying protective factors for eye and kidney complications,” Dr. King declared. “We’ve made huge progress in the past year.”
“Your hard work and determination has made this happen,” Dr. Keenan told the crowd.
The Medalists assembled at Joslin were a tough and cheerful group, ranging in age from mid-fifties to ninety-something. “I’ve never seen a healthier group of sick people before,” one of them quipped.
Medalists visited Fenway Park and the Museum of Fine Arts, told stories of their tough times and triumphs, and often choked up as they paid tribute to their parents and their spouses for critical help in managing their condition.
They also gave a collective gasp when they heard that cases of type 1 diabetes are climbing particularly quickly in children under six years of age. Proud as they are of their medals, many kept saying, they want the medals to go away.
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