Steffi Tells Her Story

Good morning Senator Collins and members of the Committee.

My name is Stephanie.  I am 11 years old. These days, all I hear is "Steffi, what's your blood sugar?" or "Steffi, how much insulin are you going to give yourself?"  Well, I was not always this way. I got juvenile diabetes when I was five and a half.  It was the week before Christmas 1999.  Thankfully my family and I caught it early.  Once you saw me it wasn't hard to see that I was really sick.  I had dark circles under my eyes, I had lost a lot of weight, and I looked like a twig.  I was also always really tired, thirsty and I couldn't stop going to the bathroom. 

Let me tell you about my typical day 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. Senator Collins, I owe you a special thanks for all you have done to support research and policies to bring us closer to a cure for diabetes.  I am so lucky that you are my Senator.

I can't remember what my life was like before diabetes, but I certainly can imagine how wonderful it would be without it!