Patsie Krook is no stranger to diabetes. Her mother was diagnosed with type 1 at age 33. Her sister had it by 13. Her daughter has had the disease for three years, and a handful of nieces and nephews have also been diagnosed. With a family tree so liberally peppered with type 1 diabetes—and a Finnish heritage known for a high incidence of the disease—Krook knew she was at risk. That’s why she and her sisters arranged mass diabetes screenings for their extended family. “We wanted to see who was at risk and to see what we can do so they don’t develop it,” says Krook, 56, who lives in New Ipswich, N.H.
They learned about TrialNet, a nationwide screening program and study sponsored by the National Institutes of Health. TrialNet tests blood for autoantibodies associated with type 1 diabetes (positive results for autoantibodies indicate a high risk) and is available at nearly 200 clinical centers nationwide or via a test kit for those who don’t live near a center. Unlike screenings in doctors’ offices, the testing is free and available to second- and third-degree relatives along with parents, children, and siblings of people with type 1.
Krook and her family decided to throw a reunion plus diabetes screening event, and thanks to the large number of family members who showed up, TrialNet investigators at Joslin Diabetes Center brought the screenings to New Hampshire. “When we have a huge risk in the family, why not get checked?” says Krook. “It prepares you a little bit more.” Since the first screening in 2001, the family has held three additional events, the last of which tested 69 people for the autoantibodies. So far, a handful of people have tested positive, including Krook’s daughter, Ashley. Five years after her screening, she was diagnosed with type 1 diabetes at age 18. “It’s a real preparation, and I guess when she got it I wasn’t in shock at all,” Krook says. “It’s different when you know that they could get it a little easier than the next person. And you kind of watch them.”
There’s another reason getting screened is a good idea: Awareness of an elevated diabetes risk may lead to early diagnosis. That could prevent a person from developing dangerous diabetic ketoacidosis. Plus, early blood glucose control may minimize the risk of future complications, says Henry Rodriguez, MD, a TrialNet investigator with the University of South Florida and a member of the Diabetes Forecast editorial board.
If eligible, participants who test positive for the antibodies may participate in a type 1 diabetes prevention trial at a local clinical center. Those who develop diabetes might qualify for a study on new-onset diabetes. (So far, only one of Krook’s family members is taking part in a study.) The research aims to further knowledge about how diabetes develops, test ways to prevent type 1 in high-risk people, and minimize complications in those who were diagnosed early on. “It will help us learn more about the disease,” says Rodriguez.
Helping advance the field of diabetes research was another reason Krook urged her family to get screened. “All our life we’ve known diabetes because Mom had it,” she says. “We’re willing to do this not only for ourselves but [so the researchers] can get information and find a cure.”