by Talley Henning Brown
I know 15 teachers, 29 musicians, and five lawyers. I know 34 “cat people” and 43 “dog people.” I know eight marathon runners and four yoga instructors. I even know someone who knows the president of the United States. I know, in short, a lot of people—and a lot of things about those people. Even a quick scan of my Facebook account can turn up some surprising facts about the ever-widening, overlapping circles of people in my life, including those I haven’t seen since third grade, who don’t know the sound of my adult voice, and those I saw this morning, who know what I ate for breakfast. In this connected-every-minute age, I know more about the people I know than is probably good for them or me. But one thing I never knew, until I joined the staff of JDRF last summer, was just how many connections I have to type 1 diabetes (T1D).
In December 2011, JDRF launched the Who’s Your Number One? Campaign, an initiative to collect personal stories from the T1D community—stories such as yours and mine—to help spread awareness of T1D and just how many people it affects. We asked you to chime in, and you did, in droves! On the Who’s Your Number One? section of our website, you can read about 17-year-old Paula, whose parents formed the first T1D support group in their native Costa Rica and opened a bakery selling diabetes-friendly foods. You can learn about Danny, who was diagnosed in 1958 at age two by a doctor who told him he would be blind by age 20. Danny still has 20/20 vision today, and is more hopeful than ever that a cure will be found for T1D. And you can be inspired by a mother’s tribute to her son Parker, a 13-year-old and the third generation in his family to have T1D. After his own diagnosis last year, as well as the death of two aunts from T1D complications, Parker decided to set his sights on becoming a pediatric endocrinologist and joining JDRF’s mission to find a cure.
Those of you who considered writing in about your Number One—but didn’t—might think that your “small” effort doesn’t make much of a difference. Here is what I would like to say to you: your story can touch many lives, and JDRF wants to hear it.
The question “Who’s Your Number One?” took on real significance for me last September when I started fundraising for my very first JDRF Walk to Cure Diabetes. I wanted my appeal to reach as many people as possible, but how to achieve that? Minus a personal connection to T1D, most people know little to nothing about the disease. But the more I thought about that fact, the less sense it made. The numbers tell it this way: as many as three million people in the United States may have T1D. According to the most recent U.S. Census data, that’s roughly one out of every 100 people. Most Americans—kids and adults—in 2012 know at least 100 people, if not several hundred. (I have 258 Facebook friends alone, and comparatively, that’s a low number.) The numbers overwhelmingly suggest that if you don’t personally know one or more people living with T1D, then statistically, you must at least know someone who knows someone with T1D.
My math is oversimplified, but a definite “six degrees of separation” pattern applies. The “six degrees” theory—first put forward by a Hungarian writer in 1929 and popularized in the 1990s by a play, movie, and game of the same title—states that a chain of no more than six acquaintances separates every human being from any other individual on the planet. As I began sending out Walk fundraising emails, I started to wonder—just how many people in my web of contacts are currently living with T1D, or have a loved one who is? Right from the start, I could name four people: two friends, two family members. Then I started receiving responses to my emails, revealing more and more connections every day. One friend’s teenage student was just diagnosed with T1D. One friend’s mother is a pediatric endocrinologist whose modest private practice treats more than 1,000 patients with T1D. One friend’s grandmother has T1D, as does another’s father-in-law, my husband’s old business partner’s daughter’s best friend … the list goes on.
The numbers belie the fact, however, that there remains a not-insignificant gap in public awareness and understanding of T1D. In the short time I have worked at JDRF, I have found myself explaining T1D on a regular basis—clarifying that it’s an autoimmune disease, like multiple sclerosis or rheumatoid arthritis, and has absolutely nothing to do with poor diet or lack of exercise. Certainly, there are reasons for the knowledge gap. Type 2 diabetes is a lot more prevalent, and it gets a lot more air space in news media, leading to understandable confusion over the difference between type 1 and type 2.
And for all the tools and supplies that come with the daily, even hourly, management of the disease, T1D is often not in plain sight. Of the four people I personally know with T1D, I have never once seen any of them check their blood glucose or inject insulin. Even when T1D is apparent—as, for example, with schoolchildren, who have to test themselves or be tested before lunch, contend with insulin pumps during sports, and generally endure a greater degree of adult supervision than their peers—there still exists a lack of understanding. As part of my work at JDRF, I read accounts frequently from parents of children with T1D who are frustrated about dealing with teachers, school administrators, and coaches—people who spend a lot of time with their children and still just “don’t get it.”
People who “don’t get it” can make life more difficult for those shouldering the daily burden of living with T1D, and those who care for them. But an even more compelling reason to keep pushing against the boundaries of awareness—and the reason why the Who’s Your Number One? Campaign is such an important initiative—is that when people do get it, they want to join in. They want to help find a cure, better treatments, and prevention for T1D. And they want to help spread awareness themselves.
I encourage all of you who have a Who’s Your Number One? story to keep telling it. A recently published study posited that, as a result of social media and the exponentially greater connectivity it has fostered, “six degrees of separation” is now actually closer to four degrees. This means that our connections to each other are growing closer. People are listening. And the more connections we forge, the more powerful our voices will be—individually and collectively. You do the math. And then send us your story.