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Nicole Johnson: Getting Real with Diabetes

There is no doubt about it. Diabetes is a daily and demanding challenge. But Nicole Johnson, who was diagnosed with type 1 diabetes in 1993, wants others with the disease to know that they too can enjoy a healthy life. Crowned Miss America in 1999 and now a busy wife, mother, and leading advocate for diabetes research and education, Johnson recently talked with the Post about what’s new about living with diabetes and her hopes for the future.

Q: You talk with many people who have diabetes. What is the most common question they ask?

A: Everyone wants to know about a cure, and then they ask about ways to make their lives easier. The short answer to the first question is that we don’t know when there will be a cure. However, we have technology that can help people right now. I manage my diabetes by wearing an insulin pump and a continuous glucose sensor. In the future, these devices will be able to communicate to each other and make intelligent decisions about how to deliver medication to the body. Right now, my insulin pump provides a slow drip of insulin into my body 24 hours a day, 7 days a week. I take it off to take a shower, and that’s about it. I manually tell it to give me insulin according to the food that I eat via a remote. Thirty or so years ago, it was called the big blue brick. Now it looks as though I’m texting on my cell phone.

Q: Isn’t type 1 diabetes typically diagnosed in young kids?

A: Research tells us that type 1 may occur at any age point. Although often detected during childhood, people in their 50s, 60s or 70s can develop the disease. A popular hypothesis is that a virus may trigger the disease in people who carry a genetic predisposition for it. That seems to have happened to me—none of my relatives have type 1 diabetes.

My daughter, who is 3 ½, is participating in an international study called Type 1 Diabetes TrialNet that is gathering information about personal and family history, health risks, and antibodies that each of us carry. They will draw her blood every year or two to assess whether her genetic predisposition has changed. So far she has the lowest risk possible of developing diabetes. But we are committed as a family to do our part in trying to advance research and prevent diabetes.

Q: What would you say to a person who has just been diagnosed with diabetes?

Former Miss America, Nicole Johnson with her daughter.

Former Miss America, Nicole Johnson with her daughter.

A: The first thing I would say is that living with diabetes does not mean you have to stop dreaming. However, if you don’t take some aggressive steps to make sure that you are managing the condition, there can come a time when the disease gets the upper hand. Patients have a responsibility to act in a way that will afford us the opportunity to pursue dreams, goals, and aspirations. But you can become a Supreme Court nominee, you can become a pro athlete, and you can become Miss America.

Q: Despite a decade of efforts of educators like yourself, Americans seem to be eating more and exercising less. Rates of diabetes are soaring. How can we hope to reverse these trends? What is it going to take?

A: We have got to figure out how to revamp and reframe our communication and educational messages about health and wellness. People need practical advice and parent training is key. One of my big struggles this week is making lunch for my daughter to take to school for the first time. It’s overwhelming! What do you put in a lunch box?

I also now have the pleasure of working in a university environment to help train medical students on issues like compassion and emotions. The goal is to improve the way they communicate health messages to their patients. Data suggest that patients absorb only about 10 percent of the health information delivered by health professionals.

The diabetes community feels as though their struggle is not understood, that they live in isolation. So we are going to have the students live like a person with diabetes. For a couple of days of their training, they will wear insulin pumps, test their blood sugar and count the carbohydrates at every meal. The effort will also expose health care professionals in new ways to available technology so that they are more familiar with it when they get into the patient environment. Only a small number of people utilize insulin pumps and sensors. And part of that underutilization is related to health care professionals who are unfamiliar with the devices.

Q: Why did you start the Nicole Johnson Foundation?

A: Part of my background is in public health, and I have become very cognizant and committed to addressing gaps in education. There is a void of appropriate health communication and a big question mark of how to address it. The Foundation exists to hold community events that focus on diabetes reality. It is very frustrating to me when patients receive information that is one size fits all. Advice such as “follow a meal plan” is not helpful when you wind up at Wendy’s and everyone is eating a Frosty. What people need to know is: Here’s how many carbs, here’s how you give the insulin, and here’s the good strategy for living. That’s the point of the foundation: to be real and let diabetes come into our lives instead of changing our lives to meet diabetes.

For more about living with diabetes, and dLife (a weekly program that airs on CNBC), visit nicolejohnson.com.

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