1. Home
  2. Health Information
  3. Clinical Trials
  4. Personal Stories: Hope from NIDDK Clinical Research
  5. Kinyatta: Dedicated to the Search for Better Health for People with Diabetes

Kinyatta: Dedicated to the Search for Better Health for People with Diabetes

A photograph of Kinyatta.
Kinyatta

Kinyatta is, in her own words, “a helper.” That helping spirit shines through in her work as an instructional assistant co-teaching the first grade. It also shows in her long-standing participation—for 15 years and counting—in the SEARCH for Diabetes in Youth study, a unique research study committed to improving the quality of life of children and young adults with diabetes.

Learning by Example

Kinyatta’s participation in SEARCH is a gift to medical research and all those with diabetes, but it is just one way she works to help children. Kinyatta has always wanted to be an educator. To find the reason, you need look no further than Kinyatta’s own first-grade teacher. “She was awesome,” Kinyatta says. One particularly memorable example involved a classroom hamster named Fluffy. In first grade, Kinyatta loved Fluffy so much that she would cry when she had to go home and leave Fluffy behind. Then, one day, her teacher arrived at her home, with a hamster of her very own for Kinyatta to keep. Referring to that generous gift, Kinyatta says, “Those are the kind of things that I do for my kids.” Whether it is listening to and supporting the children, buying them a snack if they are hungry, or making sure they have the right clothes for a school performance, Kinyatta tries to be there for her students. “I just want to be that teacher that kids can go to with their problems. If they’re having a bad day, they can talk to me. That’s just the kind of person I am.”

Living with Type 2 Diabetes

Kinyatta was diagnosed with type 2 diabetes when she was 12 years old. She had gained weight between third and sixth grades, and her mother, a nurse, was concerned. She brought up the issue to Kinyatta’s doctor, and a blood test showed that Kinyatta’s blood sugar (glucose) level was higher than normal. In type 2 diabetes, the body becomes resistant to the action of insulin, a hormone that controls blood sugar levels, and the pancreatic cells that produce insulin also don’t function normally, causing blood sugar levels to rise.

Although her family had a history of type 1 diabetes, Kinyatta didn’t know much about type 2 diabetes when she was diagnosed. Her doctors gave her basic information about the disease, showed her how to monitor her blood sugar level with a blood glucose meter, and taught her how to recognize the signs of high and low blood sugar. They also recommended that she manage her weight through diet and exercise. Kinyatta took nutrition classes that helped her make changes to her diet, such as controlling her portions and making healthy choices about what to eat.

Kinyatta had already picked up a lot of unhealthy eating habits, so changing what and how much she ate wasn’t easy. Her family’s support helped. They changed their diet as well, and joined Kinyatta in her efforts to get more exercise. She and her mother would walk every day. A few of her teachers knew what she was going through and supported her, as well.

Still, having type 2 diabetes added an extra complication to the already challenging transition to middle school. Other kids noticed that Kinyatta ate differently than they did, and some asked why she didn’t eat candy, for example. Kinyatta didn’t want to tell them she had type 2 diabetes, so she would sometimes try to deflect the questions about her choice of foods, saying it was just what she liked to eat. “It was little things like that, that I would have to fight off,” Kinyatta says. “I’ve never been a self-conscious person, but…you know, as a child that stuff starts to get to you.”

When Kinyatta made diet and lifestyle changes after her diagnosis, her family’s support helped. They changed their diet as well and joined Kinyatta in her efforts to get more exercise.

But Kinyatta’s efforts paid off: she lost a lot of excess weight over the next few years. She also stayed active throughout high school by participating in color guard and winter guard, marching with the school band, and taking dance classes. “I always tried to just stay healthy,” Kinyatta remembers.

SEARCHing for Better Health

About a year after she was diagnosed, Kinyatta was asked to join a diabetes research study called the SEARCH for Diabetes in Youth.

SEARCH is currently the largest, most diverse study of diabetes among U.S. youth ever conducted. The study is funded by the Centers for Disease Control and Prevention and the NIDDK, and SEARCH investigators seek to answer questions such as: how many children have type 1 or type 2 diabetes? How does that number change over time? What complications are these children experiencing as they age? How does having diabetes affect their lives? More than 27,000 volunteers with either type 1 or type 2 diabetes have participated in SEARCH, providing the information to help answer these questions.

Kinyatta agreed to become one of them.

Kinyatta says that she always feels well informed during her SEARCH visits. First, SEARCH coordinators contact her to begin the process. She is then sent paperwork or surveys to fill out beforehand to help expedite her visit. Once she arrives at the appointment, the SEARCH staff go over the visit with her in detail, describing what questions they are investigating, what tests they will run, and how they will use the results. The visit can take most of the day and can involve a variety of questionnaires and tests depending on the particular information the study is collecting at that time. For Kinyatta, some of those tests have included having her heart monitored, having her eyes examined, screening for depression, and taking part in a sleep study.

Being in SEARCH has also been educational in several ways. The SEARCH staff share Kinyatta’s test results with her, giving her information about her own health. She’s also learned about type 2 diabetes and strategies to manage the disease. “I’m really thankful for [the study staff], because I wouldn’t know what I know now about diabetes if it wasn’t for SEARCH.”

Since the study began in 2000, SEARCH investigators have used data provided by volunteers like Kinyatta to assess not only how widespread diabetes is in the population, but also clinical and public health implications of the disease. As a result, SEARCH has provided a wealth of information about the effects of diabetes on children and young adults, including data on the total number of youth with diabetes in the United States, the number of new cases per year, and trends in diabetes diagnosis.

Findings from SEARCH are also providing data on the complications youth with diabetes are experiencing and how diabetes affects their quality of life. For instance, before SEARCH it was unclear how soon signs of various diabetic complications appear in children and young adults. All SEARCH participants were under 20 years of age when they were diagnosed, and the tests that they have participated in at SEARCH study visits have provided sobering news about diabetes complications in those who develop type 1 or type 2 diabetes early in life. A recent SEARCH analysis estimated that by about age 21, approximately 32 percent of SEARCH participants with type 1 diabetes and 72 percent of participants with type 2 diabetes would have at least one complication from diabetes or would be at high risk for a complication such as kidney, heart, nerve, or eye disease. These findings suggest that screening for risk factors and early monitoring of youth with diabetes could result in prevention or earlier diagnosis and treatment of complications. This could ultimately contribute to the goal of better health over the lifespan.

“I love the connections that I’ve made with the people that work for SEARCH,” Kinyatta says of the research study staff. “It’s just been a good experience.”

SEARCH is planned to continue at least through 2020. Such long-term studies offer valuable insights into health trends over time, and they depend upon volunteers willing to participate for many years, as Kinyatta has. Kinyatta has no plans to quit, either. She says, “to see all the progress that I’ve helped them make is amazing to me.” She’s made strong connections with the SEARCH study staff, and they are often the first to send her a birthday card every year. “It’s just been a good experience,” Kinyatta says.

Following Her Dreams

Kinyatta says that her diabetes status has not changed much since she was diagnosed. Her HbA1c (a measure of her blood sugar level over time) has remained steady, and her doctors’ recommendations have been to continue exercising and eating a healthy diet. Kinyatta takes this advice to heart. She feels that making healthy food choices and staying active helps keep her diabetes under control, which lets her avoid the need for diabetes medications and reduces her chances of having diabetic complications later in life.

Maintaining a healthy lifestyle can still be challenging, and Kinyatta admits that she doesn’t always do as well at it as she’d like. She’ll go through “health kicks” and cravings for unhealthy food the same as anyone else, but through it all she tries to focus on the long-term goal: staying active and being mindful of what she eats. She goes to the gym and takes walks, aiming to maintain her weight, and she continues to put those childhood nutrition classes to good use. When it comes to making food choices, she says, “I’m really good at saying, ‘Well, if I had this, I don’t need this.’” Such trade-offs—a not-so-healthy breakfast in the morning, for instance, and then a salad for lunch—help her maintain balance in her diet.

“That’s the one thing that I’ve gotten out of my life: you can’t let people deter you from your dreams.”

Kinyatta still doesn’t share the knowledge that she has diabetes widely, and some people she’s known her whole life still haven’t guessed. Kinyatta thinks it’s because many people mistakenly believe that all people who have type 2 diabetes use insulin. But now Kinyatta is more likely to be forthcoming about her own experiences, pointing out that even those not on insulin therapy can have type 2 diabetes.

However, Kinyatta does not let having type 2 diabetes define her. She considers herself to have a normal life. She loves to travel and particularly loves spending time on the water. “I’m very adventurous. I just don’t let anything hold me back from trying anything new.”

Kinyatta carries that sense of adventure into her career, as well. In addition to her classroom teaching, she is studying for her master’s degree in counselor education, so that she can become a school counselor. Her ultimate career goal is to own her own business or run her own school, where she can pursue her passion for helping inner-city kids. She’d like to focus on teaching writing, reading comprehension, and literature, “because those were my biggest struggles as a child.”

She also encourages others to do what they can for their health and to make the most of their lives. No matter what, Kinyatta says, don’t give up on yourself. “I never saw myself graduating college: I did it. I never saw myself graduating with honors, and I did. I never thought about getting a master’s degree—let alone a Ph.D.—and here I am working on my master’s, and I have professors encouraging me to get a Ph.D.”

The student has become the teacher, and if there’s one thing that Kinyatta wants to pass on, to her students or to others with type 2 diabetes, it’s this: do what you’re capable of doing, no matter what others say. “That’s the one thing that I’ve gotten out of my life: you can’t let people deter you from your dreams.”

Share

This content is provided as a service of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), part of the National Institutes of Health. The NIDDK translates and disseminates research findings through its clearinghouses and education programs to increase knowledge and understanding about health and disease among patients, health professionals, and the public. Content produced by the NIDDK is carefully reviewed by NIDDK scientists and other experts.