Doing Well and Doing Good: 12 People With Diabetes Who Are Helping Others
Scientists search for a cure. Advocates tell stories of lives touched by the disease. Activists fight for equal rights. Doctors and nurses treat and educate. And product developers attempt to make day-to-day life just a little easier.
There are many heroes in the world of diabetes, and some of them are just like you: testing blood glucose levels countless times a day, injecting insulin or taking oral medications, counting carbs, reaching for sweets when they have lows. We spoke to a dozen of them to bring you their inspiring stories.
Manny Hernandez (38) Berkeley, Calif.
Founder, TuDiabetes and the Diabetes Hands Foundation
Loneliness is a mighty motivator. When Manny Hernandez was diagnosed with type 1 diabetes in 2002, he lacked a support system. And then he joined an insulin pumpers' class. "That was the first time I was around people who were like me," he says. "It was a big inspiration behind starting a social media network for people with diabetes."
In 2007, Hernandez launched TuDiabetes and the Spanish-language Es TuDiabetes. The sites started as a side project while he worked as a Web manager for a university, but they ballooned into something even Hernandez didn't foresee; TuDiabetes alone has 16,500 members today. A year later, Hernandez formed the Diabetes Hands Foundation, a nonprofit dedicated to diabetes awareness. In the past three years, the foundation has launched a massive blood glucose "test-in" called The Big Blue Test, a photo campaign called Word in Your Hand, and other projects that bring together many people with diabetes.
That community is the cornerstone of all of Hernandez's projects. "We pride ourselves in having largely a family environment, the sharing of great moments," he says. Though the sharing comes in many forms—failures and triumphs along with the day-to-day realities of life with diabetes—the websites thrive on the encouragement that members give and receive. "People describe how long they have lived with diabetes without interacting with people who have it," Hernandez says. "It is not so obvious until you see how different it is having [support]."
Jill Knapp (43) Boise, Idaho
Diabetes advocate and motivational speaker
Jill Knapp's type 2 diabetes diagnosis in 2005 was a wake-up call. By eating more vegetables, switching to six small meals a day, and exercising five days a week, Knapp lost nearly 50 pounds and no longer needed diabetes medications. And then she did something she calls "just crazy": She competed in the 2008 Mrs. Idaho pageant. There, she took advantage of the spotlight to talk about her journey with type 2 diabetes—a story she's since told at festivals, school gatherings, women's conferences, and meetings of weight-loss groups. (She also came in sixth among 16 contestants.)
Today, Knapp's mission is to educate people about type 2 treatment and prevention. She gives tips on meal planning and weight loss, the importance of seeing a diabetes educator, and why it's crucial for patients to be their own advocates. She also stresses that success only comes with hard work. "You can't just go on a diet and lose weight. You have to put in [the effort] and commit to a lifestyle change," says Knapp. "If I can do this with three children and [volunteering] at my children's school, you can."
Steven Gabbe, MD (65) Columbus, Ohio
CEO of the Ohio State University Medical Center
As a third-year medical student, Steven Gabbe diagnosed his own type 1 diabetes. But that didn't shape his professional life, at least at first. "I tried very hard to avoid taking care of patients with diabetes," he says. "I didn't want to know about the problems." It wasn't until his endocrinologist—a pioneer in the study of diabetes and pregnancy—took him under her wing that Gabbe launched his career as one of the foremost researchers in that field.
"I know that as a patient with diabetes, too often you're treated as a blood sugar," he says. "There's a lot more to each patient than a blood sugar." Today, Gabbe presides over an entire system of nonprofit hospitals and clinics—a $2 billion-a-year enterprise. But he still manages to keep his diabetes in check, running marathons, eating healthfully, and practicing good diabetes self-care. "If you are committed to doing what you want to do, you can do it," he says. "When I was in medical school, people said, 'Why don't you choose a field with more stability?' But that wasn't what I wanted to do. In fact, my field, high-risk obstetrics, had me up in the middle of the night delivering babies. But I wouldn't change it. It's what I love to do."
Angie Stone (49) Atlanta
Before neo-soul singer Angie Stone ever stood up in front of an audience to preach diabetes control, she faced her own type 2 diagnosis. The process started with denial. "I said I was too young," she recalls. "I didn't eat junk food. I didn't understand the disease—I thought it was for obese people, that you ate too much sugar. I didn't do anything [wrong], in my opinion."
The diagnosis came in 1999 just as Stone's star was rising, and it threw her life out of kilter. "I wish someone had told me that it could always be worse, that diabetes management is possible," Stone says, looking back. She earned that wisdom on her own. "Gradually, I came to accept my diabetes when I realized just how many people around me, even in my own family, were living with diabetes," she says. "It gave me back a lot of courage to see all these people just like me, going places, involved in normal things, and I became determined to learn what I needed to better manage my diabetes."
Stone started to exercise more often and transformed her eating habits. "I was used to eating what I liked to eat," she says. "I've switched from fried foods to baked. I use sugar substitutes instead of the real stuff." A decade later, Stone's diabetes is controlled with a healthy lifestyle and medication. Now she is on a mission to help others within the African American community through Eli Lilly's FACE Diabetes (Fearless African Americans Connected and Empowered) campaign. Launched in 2008, the initiative spreads the word about diabetes to a community at high risk for type 2. It also educates those living with the disease about the importance of good management. Stone calls it "a golden opportunity to show people that you don't have to fear it. You can have a normal, healthy, good life with diabetes. . . . There's more than one side to the disease. There is a side you can control."
And Stone's life is proof that diabetes control can fit into even the most hectic of schedules. The singer, who has a fiancé and two kids, writes and records music, tours the country, and speaks out about diabetes and healthy living at conferences, churches, expos, and other events nationwide. "I know firsthand the consequences of not being in control of diabetes," she says. "Now, I'm healthy, happy, and successfully managing my diabetes, which is why I feel so strongly about helping African Americans . . . learn how to better manage their condition, too."
Brandy Barnes (35) Durham, N.C.
Founder, Diabetes Sisters
Though she was diagnosed with diabetes at 15, Brandy Barnes didn't find a solid support network until her 30s—when she created one. The idea came when she was pregnant. "It was really isolating and scary to be going through the whole pregnancy with diabetes," she says. "I had lots of friends, and we talked, but I had no one to talk about diabetes with. When I talked about A1C, no one really got it." So, in 2008 Barnes, then a pharmaceutical sales representative, created a website where women with all types of diabetes could connect and interact. Diabetes Sisters started out as a hobby. By May of this year she was organizing the nonprofit's first national conference, a gathering of 100 people from across the country. "At the very beginning, I got lots of e-mails from women saying, 'Oh my God, where has this been? I've been looking for this for years,' " says Barnes.
In 2011, Barnes plans to hold two more conferences open to a greater number of women. The organization boasts other community-building programs, such as a virtual matchup between women of similar ages from all over the world, local meet-ups, and an active website that includes a forum for registered members. Barnes hopes that Diabetes Sisters is giving women with diabetes a piece of the health care puzzle she waited so long to find. "When you have these other women cheering you on," she says, "it makes a huge difference in how you look at your diabetes and how motivated you are to take care of yourself."
John Griffin, Jr. (54) Victoria, Texas
Lawyer and diabetes advocate
When John Griffin, Jr., won his first diabetes discrimination case in the early 1990s—representing a UPS driver who had lost his position because of his diabetes—he didn't know just how much diabetes would become a part of his life. "Never in a million years would I have predicted this," he says. "It seems hard to believe, but looking back, I knew nothing about diabetes in the world or in the United States." In 1997, he was diagnosed with type 2, but by then he was already working hand-in-hand with the American Diabetes Association (ADA) on behalf of people with diabetes.
Soon, Griffin was taking on other employers who discriminated against people with diabetes—and winning. He now handles about 10 such cases a year, which often set precedents and touch countless others who live with the disease. When a high-profile employer decides not to discriminate against people with diabetes, "that opens up the way for thousands and thousands of people," he says. "Each one of these people we touch has a huge domino effect."
Griffin, ADA's chair of the board-elect, doesn't just fight in the courtroom, though. He's active on the state and national levels, advocating for change and supporting funding for research into a cure. Becoming an activist, he says, is important for everyone with diabetes. "We need to be on the map in our local community as well as in Washington, D.C.," he says. "We're not going to stop until we're successful. There is no compromise. There is no surrender. Until we have this disease cured, we will not stop."
Rosa Rosen (58) New York City
Founder, Diabetes & Nutrition newspaper
Seven people in Rosa Rosen's family have diabetes, yet when she was diagnosed with type 2 in 1997 she knew little about it. "I was shocked, number one, to find that Latinos had such a high rate of diabetes. And, number two, that diet was such a big part of type 2 diabetes," she says. "There was so little information on our culture, our diet. All the recipes and all the information were translated from the English."
Rosen's answer: launching a bilingual newspaper, Diabetes & Nutrition (Diabetes & Nutrición). Rosen, who was born in the Dominican Republic, says the paper is now published 10 times a year and reaches 70,000 people in New York City. It offers diabetes basics, recipe ideas, and tips on melding Latin American heritage with diabetes-specific nutrition. "There's a lot of ignorance about diabetes," says Rosen. "People tell me, 'I don't know why my sugar levels are so high. I stopped eating sugar so long ago.' That's how I thought before I was diagnosed." Rosen hopes to teach others what she didn't know, and her dedication to the newspaper (work she does for free) is a testament to that fact.
Peter Nerothin (31) San Diego
Peter Nerothin was always an athlete: He completed his first marathon at the age of 20. But it wasn't until he was diagnosed with type 1 diabetes that his passion became his calling. "It became increasingly clear that I'd never be healthy unless I could make active living a hands-down priority in my life," he says. So in 2005, in the midst of training for an Ironman race, Nerothin created Insulindependence.
The nonprofit organization launched with an expedition to Peru, where a group of five teens and three adult mentors spent two weeks hiking through the Andes and learning to manage diabetes in some of the most challenging of circumstances. "Since teens and adolescents are naturally most vulnerable to attitude changes, that's where we feel we can have the biggest impact," he says. Encouraged by the trip's success, Nerothin expanded opportunities to all ages; Insulindependence now offers travel adventures, a surfing club, a running and walking club, and the Triabetes triathlon club for people with diabetes.
There's a common thread that runs through all Insulindependence programs: the idea of pushing yourself physically. "Leaving a place where we feel comfortable is the only chance we have to grow as individuals. This is especially true with diabetes," says Nerothin. "Life is never static or predictable, and the people who accept this are the ones who are best equipped to face unforeseen challenges." For the teens, adults, and about 800 volunteers who are members of Insulindependence, it's also about building relationships with people who understand what it means to live an active life with diabetes.
Noah Brokmeier (9) Taunton, Mass.
Most 6-year-olds diagnosed with a chronic illness might cry, or get angry, or pretend their disease doesn't exist. But Noah Brokmeier? He started an awareness campaign. Three years after being diagnosed with type 1, Noah has become the Diabetes Dude, and what started out as a local campaign to raise money for the American Diabetes Association—delivering blue flamingos to neighbors to raise awareness about the disease—has become a national movement.
Today, Noah, a fourth grader, attaches an informational card about type 1 and type 2 diabetes to each flamingo so that recipients can learn about the disease. People who receive a flamingo can pass it on to friends to raise awareness, or they can keep the token and nominate a friend to get "flocked" by the Diabetes Dude. Noah's goal is to reach all 50 states by the end of the year. (At this writing, he's well past the halfway mark.) "We're trying to get it so that people will be like, 'Oh, a blue flamingo? Diabetes!' " he says.
Both Noah and his parents hope that the campaign can answer common questions people have about diabetes, presenting facts like "diabetes is still a disease, but diabetics can still do what they want to," says Noah. And as if covering the country in a sea of blue flamingos isn't a lofty enough mark to hit by age 10, Noah has bigger plans: "After all 50 states, we're going to get the whole world."
Saul Zuckman (70) Columbia, Md.
Cyclist, Team Type 2
When Team Type 2—a group of cyclists with diabetes who race to raise awareness about the disease—asked Saul Zuckman to join its ranks in 2008, he barely hesitated. Zuckman was physically active before his 1990 diagnosis, and even more so when he was told he had type 2. "That was an opportunity to combine my passion for cycling with my passion for wanting to fulfill my promise to myself and my family that I would take care of my diabetes," he says. And so Zuckman, a retired chief financial officer and small-business consultant, trained for his first cross-country ride: the 2010 Race Across America. With eight other cyclists, Zuckman took turns pedaling from Oceanside, Calif., to Annapolis, Md.—a total of about 60 miles a day per person.
If the training was tough, the race itself tested not only Zuckman's endurance but also his diabetes management. "It was harder to manage the diabetes than it was to get physically fit. I know how to train; I've done it before," he says. "With the diabetes, you're riding at different hours of the day and night, and you're riding under different conditions." Though he had to keep close tabs on his carbohydrate intake and test his blood glucose upwards of 35 times a day, Zuckman says finishing the race was worth every finger stick. "The camaraderie, the challenge: It takes a village to get a team of diabetics across the country," he quips. "We all supported each other."
Zuckman hopes to qualify for next year's Race Across America, which will force him to hone his diabetes management skills even more—something he says takes more determination than skill. "I'm just an ordinary person of maybe advanced age dealing with type 2 diabetes," he says. "I made the commitment that this is what I want to do."
Florene Linnen (67) Georgetown, S.C.
Founder, Georgetown County Diabetes CORE Group
It took 16 years and one diabetes education course for Florene Linnen to understand that her type 2 diabetes was serious. "I learned in three days more than I had learned the entire time as a diabetic," she says. And then she took that information home. "I started in my church," Linnen recalls. "There we found about 70-something diabetics. That wasn't enough for me. I started in the community. And then I said: That's not enough." So she founded the Georgetown County Diabetes Community Outreach Resources & Education (CORE) Group, which works with people in this rural area of South Carolina.
The biggest hurdle, Linnen says, was communicating the severity of diabetes. She'd tell people, "I thought, oh, a little sugar—nothing to it," she says. "I learned it's more than a little sugar. Diabetes affects your entire body. The good news is you can control it." Linnen has spread the word about type 2 at health fairs, workshops, presentations, and banquets. She was instrumental in the opening of a health clinic in her town.
This summer, her group launched two new initiatives: a community garden and a program to bring Linnen and a doctor into people's homes to banish junk food. Her mission is to teach the entire community about healthy ways of eating—and to let them spread the word from there. "I say, 'People, you can do this in your community. You can be the tool that starts it in your community. All you have to do is really get started.' "
Toby Smithson (50) Vernon Hills, Ill.
Registered dietitian and teen diabetes mentor
When a social worker asked Toby Smithson to teach nutrition to a group of local high school students with diabetes, she knew that Smithson was a registered dietitian for the county health department. What she didn't realize was that Smithson had lived with type 1 diabetes for more than 40 years. Smithson accepted the offer, and for the past five years has taught more than a dozen kids with diabetes the ins and outs of management and nutrition. "What I try to do is empower the students to take care of themselves but to know they're not alone," she says.
Smithson's group—girls and boys, ranging from freshmen to seniors, and including one teen with type 2—does more than learn about carb counting, hypoglycemia, and how to use an insulin pump. It tackles topics that parents may avoid and typical health classes may leave out, such as driving, dating, drugs, alcohol, and sex—and how diabetes affects and is affected by each. "They wouldn't have gotten [the information] elsewhere, and they wouldn't have gotten it correctly," says Smithson.
Plus, the teens get to know other kids just like them. To emphasize the connection, Smithson offers up her personal stories. "I let them know I'm in this with them," she says. "Especially with kids, you get: 'You don't know what I'm talking about.'" Smithson makes sure her lessons aren't all about rules; she also fosters hope through her encouragement. She tells them that "they're OK. They're not different. They can do anything. The sky's the limit."