Mike: Advancing Research Toward Understanding Rare & Atypical Types of Diabetes

Mike (left) and his two brothers participate in the NIDDK-supported RADIANT study

Mike’s diabetes journey has not been like that of most people with type 1 or type 2 diabetes. A couple days before his 28th birthday, he decided to sign up for a life insurance policy because his friend who worked for an insurance company had asked for help meeting a quota. As part of his application, Mike had to go to the doctor for a physical exam. A few weeks later, he got an unexpected phone call from that same friend. “He told me I needed to go to a hospital right then, like I will die if I don’t,” he remembers.

When he went to the emergency room, doctors measured his blood sugar (glucose) levels and found that they were unusually high. Extremely high blood sugar levels are a symptom of a life-threatening condition called diabetic ketoacidosis, which is why his friend was so worried. The doctors immediately diagnosed him with diabetes, but it was clear from the beginning that his case was not a conventional type of diabetes—neither type 1 nor type 2. Despite the high blood sugar levels, he had no obvious symptoms at the time. He did not have autoantibodies attacking the insulin-producing cells of his pancreas, as is associated with type 1 diabetes. One year before, his blood sugar levels were perfectly fine. He was young and healthy and kept an active lifestyle. However, he did note that he was losing weight, which he later realized was a symptom of diabetes.

“I said, ‘Well, that’s awful because if I can’t name my disease, how am I supposed to fight it or do anything with it?’” remembers Mike, after his primary care physician told him that he had an atypical form of diabetes.

Mike’s primary care physician at the time told him that based on test results he had characteristics of both type 1 and type 2 diabetes, but his disease was not either type definitively. “I said, ‘Well, that’s awful because if I can’t name my disease, how am I supposed to fight it or do anything with it?’” he recalls. When asked about how he felt while trying to get a proper diagnosis, Mike responds, “I got rejected from probably 80 percent of the diabetes studies I tried to enter over the course of 3 years.” It was frustrating for him because it wasn’t always clear from the study criteria whether he was eligible to enroll. Also, some health care professionals whom he interacted with treated him like a typical type 2 diabetes patient. “I think that the frustration really came from just trying so hard to figure out a part of yourself that you don't know anything about,” he says.

And then the same diagnosis happened to his two younger brothers. Two years after Mike’s diagnosis, his middle brother found out he also had diabetes that was atypical, just like Mike’s. His brother was in the middle of training for a marathon, running 13-14 miles a day. It wasn’t surprising that he had lost a lot of weight, but it turned out that the weight loss was a symptom of diabetes. After that, Mike was not surprised when his youngest brother also got the same diagnosis.

“I think that the frustration really came from just trying so hard to figure out a part of yourself that you don't know anything about,” Mike says, talking about navigating the health care system with an atypical form of diabetes.

In his early forties now, Mike—a chemical engineer by training—works at a company that makes industrial printers. Outside of work, he is a member of his City Council and likes to keep himself busy by getting involved in activities in his tight-knit community when he isn’t parenting his 1-year-old son. When asked about how he has been managing his diabetes, he responds that he considers himself fortunate because the artificial pancreas technology that he uses “is amazing.” Mike, his middle brother who has a geophysics degree, and their youngest brother who has a degree in aeronautical engineering are “all nerds together,” taking a very scientific approach to managing diabetes, and they appreciate the technological advances that allow them to manage their diabetes with less burden.

In fact, it was one of Mike’s brothers who first found out about NIDDK’s Rare and Atypical Diabetes Network (RADIANT). Given his past experiences of not being eligible for most research studies, Mike discovered that RADIANT was tailor-made for people like him and his brothers—the Network was studying people with atypical forms of diabetes. All three brothers are now RADIANT study participants, and Mike participates at Massachusetts General Hospital, one of the 14 RADIANT clinical centers. As part of RADIANT, Mike was asked to fill out questionnaires, visit the clinical center to undergo physical exams and that scientists could build a comprehensive resource of genetic, clinical, and descriptive data. Scientists will then study the data from the dedicated RADIANT volunteers, including Mike and his brothers, to begin to understand how and why diabetes can vary so greatly. Such knowledge could help to establish new diagnostic criteria for diabetes, find new markers for screening, or identify drug targets for new therapies that could bring more precision to diabetes treatment.

Mike mentions that, even though the study is relatively new, it has been helpful in that participants have been able to get health information and data about themselves already. The three brothers got the same results on all the tests, so they know for certain that they have the same condition. For Mike, the experience that he and his brothers share in being in the same study has been great as well. A few weeks after Mike and his brothers went through a very comprehensive physical exam, they got to meet up at a family gathering and compare notes. He says that it feels good to be able to share results and speculate with his siblings about whether it may have been a specific environmental factor in their childhood or a genetic factor that contributed to them developing diabetes. They are hoping that RADIANT will give them some answers.

“I can help the future of science and hopefully be able to learn something about myself,” says Mike, speaking about his participation in NIDDK’s Rare and Atypical Diabetes Network (RADIANT).

Mike also hopes that the data he contributes to RADIANT will be used not just for him but for other people who may have similar symptoms. “It would be really neat to be able to make those connections,” Mike says. Moreover, he hopes that one day, researchers will be able to put a name to his type of diabetes. For what he’s learned already and for what the future promises, his excitement about being a RADIANT study participant is clear: “I can help the future of science and hopefully be able to learn something about myself.”

Looking back at his diabetes journey now, Mike finds some silver linings. He was able to rekindle a friendship with someone whom he had met a few years before he was diagnosed with diabetes. After learning about his diagnosis, the friend reached out to Mike out of the blue and told him about a couple of clinical studies he might be interested in. When everyone else in his life was pitying him about his diabetes, she said, “Here, do some science with it,” which he appreciated. Ten years later, she became his wife. Mike says, “It is wild to think that this disease that has complicated my life significantly has indirectly caused … a lot of the best things in my life, too, and it is a constant reminder that these things aren’t necessarily the end… I might as well smile about it and look at all the good things it’s done for me.”