By Michelle A. Cissell, Ph.D.
“I have [type 1] diabetes. Diabetes doesn’t have me.”
Those words illustrate the feisty attitude of Annette Richardson-Bienkowski, 72, a participant in the 50-Year Medalist Study at the Joslin Diabetes Center in Boston, MA. Led by George King, M.D., chief scientific officer at Joslin, this groundbreaking research study, which has received more than $2.5 million in support from JDRF, is revealing new information about the long-term effects of type 1 diabetes (T1D) in some individuals.
Since 1970, the Joslin Medalist Program has awarded medals to individuals who have lived with T1D for 50 years or longer. Medalists who agree to join the study travel to Joslin, where they participate in a daylong series of medical tests. They fill out questionnaires about their health history and provide samples of their blood for genetic testing and urine to check for kidney disease. The Medalists also undergo a series of laboratory tests, including those to look for retinopathy (eye disease) and nephropathy (kidney damage) and to find out if their pancreases produce any insulin at all. Some Medalists return for follow-up tests after three years so the study team can identify any changes in their health over time.
Over the last six years, Dr. King and his team have recruited nearly 750 Medalists, collected tens of thousands of biological samples, and reported several discoveries to the T1D research community.
Dr. King and colleagues have found, for example, that Medalists have much lower rates of complications than predicted based on their duration of T1D. And more than two-thirds of the Medalists, even after half a century, produce small amounts of insulin in their pancreases, an exciting and unexpected finding.
Of course, laboratory test results and scientific reports tell only part of the story. The Medalists have led extraordinary lives characterized by a determination to not let T1D define or limit them. These are just a few stories from their inspiring 50+ year journeys:
Defying the odds
Annette was 17 years old when she was diagnosed with T1D by doctors in her native England. After an initial misdiagnosis, Annette had been rushed to the hospital, where her parents were told she had one day to live. Even as she regained her strength, the doctors advised Annette’s parents that she should stay with them for the rest of her life, should never get married or have children, and could expect to live into her 30s at best.
Annette, who was graced with an adventurous spirit, decided to break the rules. She reasoned, “Well, my life’s going to be a bit short, so if I ever want to do anything, I’d better hurry up and do it.”
At 21, Annette fulfilled her dream to travel by immigrating to the United States. In time, she fell in love, married her husband, John Richardson-Bienkowski, and had two daughters and, eventually, four grandsons. Annette says of those doctors back in 1958, “I proved them wrong. That one day turned into 54 years!”
Dr. King has reported that 43 percent of all Medalists have no proliferative retinopathy (eye disease); 87 percent do not have kidney disease; 39 percent have no neuropathy (nerve damage); and 52 percent are free of cardiovascular disease. In the long term, Dr. King and other researchers want to understand why many Medalists seem to be protected from complications and then use that knowledge to develop new therapies to prevent or reverse complications in all people with diabetes.
Annette credits her good health to her positive attitude toward life and T1D. “I laugh a lot,” she says, “and I tell everybody that laughter is my best drug, after insulin.”
And, for others diagnosed with T1D, Annette suggests, “Accept [the disease], deal with it, and don’t let it curb your life at all.”
Choosing an active lifestyle
Allen Wilson, 64, was diagnosed with T1D shortly before his 13th birthday in 1960. Now one of the newest Medalists, Allen and his wife, Terry Andrews, traveled in April 2012 from Gold Beach, OR, to Joslin in Massachusetts to participate in the study. From the tests, Allen found out that he has some neuropathy in his feet, but his eyes and kidneys are in good shape.
As well as maintaining glucose control and sticking to a Mediterranean-style diet (rich in plant-based foods, healthy fats, poultry, and fish), Allen says, “exercise is the number one thing” that has helped him stay healthy.
Allen’s commitment to physical activity began at an early age. “I chose from my teenage years to be active in the outdoors,” he recalls.
That choice led him, in 1969, to refurbish an old Volkswagen bus and set off on a trip around the country. Allen ended up on the South Rim of the Grand Canyon, where he hiked to the bottom of the canyon and came across a river company. For the next eight years, Allen worked as a river guide on the Colorado River, never letting T1D slow him down.
Throughout his life, Allen stayed active with construction work and even set up his own river company on the Chetco River in Oregon. Today, Allen finds, “if I miss two or three days of exercise, that’s when my diabetes gets out of control.”
Dr. King observes that healthy, active lifestyles are characteristic of the Medalists overall. The Medalists, he reports, are “very good in their habits. All of them are very careful people. They follow very good regimens with respect to food and insulin therapy. And, as a group, they exercise a lot and believe that to be important.”
Allen advises anyone with T1D to be open to new possibilities. “As a young person, I decided to go about my life pursuing and taking advantage of whatever came my way,” he says. “When an opportunity comes along and you find it interesting or exciting, don’t let diabetes get in the way. Be prepared for anything, take lots of reserve diabetes supplies to keep you going, and follow your dreams.”
Finding a good support system
Louise Jesserer, 63, of West Henrietta, NY, was diagnosed with T1D on Halloween in 1955. It was not easy for a young girl who loved candy to be told she could never again eat sweets, as people with T1D were advised at that time. And bringing apples instead of cupcakes for her birthday party in third grade reinforced the feeling of being different from other kids.
Her sense of isolation began to turn around in her teenage years, when Louise attended a camp for children with diabetes, Ho Mita Koda in Ohio. She recalls the camp as “the best experience I ever could have had.” Camp helped Louise learn that she was not really alone or different and that she did not have to be embarrassed to take care of herself and her T1D.
Over time, Louise decided, “I’m going to partner with this thing called diabetes instead of arguing with it.”
As an adult, Louise became an avid cyclist and successfully completed four “century” bike rides of 100 miles each. Biking 100 miles in one day while maintaining glucose control can be a challenge, but Louise always enlisted a companion to ride with her in case she needed help along the way.
One of Louise’s greatest sources of support over the years has been her husband, Dale LaDue. Shortly before their wedding, Louise was diagnosed with retinopathy, her only complication to date. Although Louise worried about being a burden if she lost her sight, Dale was not deterred.
Eighteen years later, Louise’s retinopathy is under control, and she says, “I couldn’t ask for a better husband who doesn’t feel intimidated by crises.”
At her first study visit in 2006, Louise was asked how she has lived in good health for so long. Her answer would be echoed by many of the Medalists. Louise believes, “if I ever designed a recipe for complication-free living, it would include God, self-discipline, focus, independence, a sense of humor, and a strong supportive network of family, friends, and medical personnel.”
Volunteering for the cure
For Bea Quirk, 57, traveling to Joslin for the Medalist Study was a homecoming of sorts. She does not remember being diagnosed with T1D as a two-year-old in 1957. But, growing up in Massachusetts, Bea was treated at the Joslin Clinic, and one of those childhood visits to the doctor has become a fond memory—the day Bea met Elliott P. Joslin, M.D., founder of the clinic.
Dr. Joslin was the first physician in the United States to specialize in diabetes, and an early advocate for empowering people with diabetes to care for themselves with insulin therapy, diet, and exercise.
Bea remembers Dr. Joslin as a “very elderly man—tall, bald, glasses, and a really sweet face. He bent down and took my hand, and I remember even all these years later, he looked at me like I was so special and so wonderful.”
Bea now lives in Charlotte, NC, where she has had a varied and successful career in politics, community activism, and freelance writing. She has cardiovascular disease and retinopathy, which puts some restrictions on her driving. She is creative about getting around them. In addition, Bea maintains a healthy lifestyle with daily yoga sessions, a mostly meat-free diet, and an active social life.
Bea is clear that she does not view herself as a victim. “Type 1 diabetes is part of who I am, but it is not the defining essence of me,” she states. “I have found that, living with diabetes, it is how you act in the outside world that defines you, far more than the disease inside you.”
Inspired by her encounter with Dr. Joslin, as well as a lifelong interest in science, Bea quickly volunteered for the study after receiving the 50-Year Medal. Around 85 percent of people awarded a Medal since the start of the study have agreed to participate—an unusually high rate of consent for a clinical study, according to Dr. King.
Bea has also agreed to donate her organs to the study upon her death. Dr. King’s research on pancreases donated by other Medalists reveals that some insulin-producing cells are present in all Medalists even after decades of T1D. This result verifies another surprising finding: that some Medalists still produce small amounts of insulin in their pancreases. Thus, for some people with T1D, there may be a balance between the autoimmune process that destroys insulin-producing beta cells and a regeneration process that creates new beta cells. Researchers can now work to develop therapies that tip the balance toward beta cell regeneration, for the benefit of all people with T1D.
Bea’s motivation to volunteer her time and body for T1D research reflects a common attitude among the Medalists. “It was a no-brainer to get involved with the study,” she explains. “Research has helped me all of my life, so I want to pass it on and see if I can help others.”
Looking to the future
Helen Nickerson, Ph.D., JDRF’s senior scientific program manager of complications, is excited about the findings of the Medalist Study and the new directions for therapeutic development that may emerge.
“The Study gives us the chance to search for factors that protect against complications of type 1 diabetes in the long term,” Dr. Nickerson says. “We hope that if we can find these protective factors, it may be possible to translate them into therapies to prevent or reduce progression of complications in others with type 1 diabetes.”
In addition to the Medalist Study itself, JDRF also supports another research project aimed at identifying those protective factors. Joslin scientist Rohit Kulkarni, M.D., Ph.D., who receives funding from JDRF, has successfully turned skin cells from the Medalists into a form of stem cells known as “induced pluripotent stem (iPS) cells.”
Dr. Kulkarni and other researchers can now use these iPS cells to produce any cell type in an adult body, such as blood vessel cells, pancreatic beta cells, or T cells of the immune system. By comparing iPS cells from the Medalists to iPS cells from people with T1D complications or people without T1D, researchers will try to identify the factors that protect many of the Medalists from complications.
Thriving with T1D
The 50-Year Medalists share several qualities—a sense of adventure, a commitment to a healthy lifestyle, a strong support system and willingness to accept help, and a positive, upbeat mind-set that has not let T1D stand in the way of a full and active life. All of the Medalists also express a passion for contributing to T1D research in whatever way they can, so that others diagnosed with this disease will have an easier road ahead.
Dr. King and the study team are grateful to the Medalists. “We thank them profusely,” Dr. King states. “As a group, they’re wonderful people. Their contributions are absolutely essential, and the results already are changing the way we think about beta cell function in long-term diabetes and how we go about studying diabetic complications, especially for the eye and kidney.”
The Medalists are inspirational role models. They demonstrate not only that it is possible to survive for more than half a century with T1D, but also that people with T1D can thrive, leading healthy, active, adventurous lives without limitation.
Anyone with T1D who resides in the United States and thinks he or she might be eligible for a Joslin 50-Year Medal is welcome to contact Sara Turek, study coordinator, at 617-309-3481 or firstname.lastname@example.org.