The delegates ranged in age from 2 to 17, and were chosen for the Children's Congress from nearly 1,000 applicants. All live with Type 1, or juvenile, diabetes – a disease in which the body's immune system attacks the pancreas and destroys the islet cells that produce insulin. During the group's visit, I was honored to have the opportunity to spend some time with the delegate from Maine, a wonderful eleven-year-old Stephanie, "Steffi" Rothweiller of Falmouth.
As Co-Chair of JDRF's Children's Congress, I chaired a hearing examining the devastating impact that juvenile diabetes has on American children and their families. It was during this hearing that Steffi and other JDRF Children's Congress delegates shared their personal stories. In addition to hearing about the personal toll that this disease imposes, we heard testimony about the promising breakthroughs in juvenile diabetes research that hold such hope for better treatments and, ultimately, a cure.
Juvenile diabetes is the second most common chronic disease affecting children, and it is one that is never outgrown. An average child with Type 1 diabetes will have to take more than 50,000 insulin shots in a lifetime. Moreover, those injections must be balanced with regular meals and daily exercise, and blood sugar levels must be closely monitored throughout their lives through frequent testing.
These statistics are truly overwhelming. But what really motivated me to devote so much energy to this cause was meeting more and more people – like Steffi and her family – whose lives have been forever changed by diabetes.
Steffi's story of living with juvenile diabetes is inspiring. She has already lived half of her life with Type 1 diabetes – she learned that she had the disease the week before Christmas when she was five and a half. Steffi, however, has not let diabetes slow her down. She dances, plays softball, surfs, and is a certified scuba diver. She also has raised $75,000 for diabetes research through her JDRF Walk team, Steffi's Stompers.
At the hearing, Steffi told us that when she developed diabetes, the symptoms were evident: dark circles under her eyes, weight loss, fatigue, and an almost insatiable thirst. She described herself as a "twig." Steffi was lucky; her family noticed these symptoms early. Since her diagnosis Steffi endures different questions than most children her age, including, "Steffi, what's your blood sugar?" and "Steffi, how much insulin are you going to give yourself?"
Steffi shared her typical day, which is inundated with reminders that she is living with diabetes:
"When I wake up, the first thing I do is check my blood. If it's out of range, that determines what I can eat for breakfast. When I'm at school, I call the nurse three times a day – at snack, lunch, and before I go home to report my blood sugar numbers. I also have to carry a blood testing meter with me at all times. On school trips, one of my parents has to come with me and if that's not possible, one of the school nurses has to go. My friends have learned what to do if I become unconscious and how to help me.
"Eating is a big problem. If my blood sugars are too high, I can't eat with my family and have to wait 20-30 minutes for the insulin to work. I am very active with tennis, Irish Dancing, and softball. My whole family has learned how to count carbohydrates, know their glycemic index and evaluate the impact of my exercise on my blood sugar levels. Every day at every meal, activity, and during the night, my parents are calculating and projecting my blood sugar levels to keep me in good control.
"At first, I thought diabetes was like a cold, and that it would be gone in a week or so. Little did I know that I would have it the rest of my life. I actually can't remember having a normal life without diabetes.
"I have learned a lot about life that I might not have if I didn't have diabetes. One thing I have learned is how fortunate I was to have caught the diabetes early. I also know how lucky I am to have parents who give up their nights, weekends, and every hour of every day to take care of me and make sure I stay in tight control of my blood sugar levels so I stay as healthy as possible. I am also lucky to have access to the best technologies – I wear an insulin pump which makes it easier to stay in good control.
"I know that it's possible to find a cure for diabetes – think about all of the miraculous advances that have occurred in our time. And I know that a cure will only come from research. So I ask each member of this Committee and every Member of Congress to do all they can to support promising research that will bring us to a cure as quickly as possible.
"I can't remember what my life was like before diabetes, but I certainly can imagine how wonderful it would be without it!"
Steffi and the millions of people living with diabetes should know what it is like to live without diabetes.
Since I founded the Senate Diabetes Caucus in 1997, funding for diabetes research at the National Institutes of Health has more than tripled to more than one billion dollars last year. The investment is well worth it: is estimated that diabetes accounts for more than $132 billion of our nation's annual health care costs. Health spending for people with diabetes is almost double what it would be if they did not have the disease.
We have seen some encouraging breakthroughs in diabetes research, and we are on the threshold of a number of important new discoveries. I am particularly excited about the promise that stem cell research holds. Early research has shown that stem cells have the potential to develop into insulin-producing cells that could replace those that have been destroyed in people with Type 1 diabetes. We simply cannot ignore the potential that this research holds.
Now is not the time to take our foot off the accelerator. We must maintain our commitment to increasing funding for diabetes research so that we can take full advantage of emerging opportunities. I want to thank Steffi and the other JDRF Children's Congress delegates for sharing their stories to remind us of how important it is that we continue our fight to find a cure for juvenile diabetes as well as Type 2 diabetes.
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