Miss America 1999 Nicole Johnson (Photo courtesy of Nicole Johnson)
Being diagnosed with Type 1 diabetes at the age of 19 changed the trajectory of Nicole Johnson’s life. She was a college student and pageant contestant with no family history of the disease and no idea of what it would mean to live the rest of her life with a chronic illness that today affects 1.7 million people in the United States.
“My diagnosis with Type 1 came as a complete shock. I didn’t have a close family member or know an individual with Type 1, so the knowledge curve was humongous,” said Johnson, who was diagnosed in 1993 shortly after she fainted on stage at the Miss Sarasota/Manatee County pageant.
Type 1 diabetes (T1D), previously known as juvenile diabetes, is often diagnosed in children and young adults, but it can develop at any age. It occurs when there is a problem with the insulin-producing beta cells in the pancreas and they are attacked and killed by the body’s immune system. Since there is no cure, people with T1D must take daily insulin and closely monitor their blood sugar levels.
A life of advocacy begins
After her diagnosis, Johnson experienced discrimination from those who doubted her abilities or were afraid of her because she had a disease they didn’t understand. Doctors even recommended she give up the stressful competition schedule to better manage her condition. But she didn’t give up, even when setbacks occurred.
In 1997, Johnson was found unconscious due to low blood sugar in the middle of the night during the Miss Virginia competition. She was treated by paramedics and within a few days was fitted for her first insulin pump, a wearable medical device that delivers insulin as needed under the skin to control blood sugar levels.
Wearing the pump, a novel device for that time, saved her life and changed it forever. She went on to be crowned Miss Virginia 1998 and win the 1999 Miss America pageant. She became the first Miss America with diabetes and the first contestant to wear and publicize the use of an insulin pump.
These experiences and the support of her family shaped Johnson into one of the most visible advocates for T1D in the country to this day.
“It was a privilege to wind up at Miss America telling my story of the challenges and lack of understanding I was facing around living with Type 1,” Johnson said. “Telling that story, helped me become an extreme advocate for people with diabetes, which I don’t think I had the vision for early on…it just happened. I like to say it was God’s way of putting me in the right place at the right time. I just said yes to everything along the way.”
Disease is not a deficit
Now 26 years after Miss America, Johnson has used her platform to build a career focused on diabetes research, advocacy, and patient education. Her message is that living with diabetes doesn’t have to hold one back from their dreams or a fulfilling life as she has shown through her own achievements as a scholar, volunteer, leader, speaker, mother, author, and educator.
“As my time with Type 1 progressed, I realized that my purpose and my role in this environment was to help people see possibility instead of deficit and that’s really where I have spent my entire career, helping individuals see that a diagnosis is not an end, it’s the beginning of a new chapter,” she said.
Miss America scholarship money helped her pursue her interest in diabetes research. She earned a Master of Public Health from the University of Pittsburgh in 2007 and a Doctor of Public Health from the University of South Florida in 2013 with an emphasis on behavioral science. She studied psychosocial impacts associated with T1D, particularly on family members living with someone with the condition.
She has made her mark on the diabetes community through numerous professional roles, both volunteer and staff, including at the American Diabetes Association (ADA) and Breakthrough T1D (formerly JDRF). She was recently the Vice President of Operations in Science and Health Care at the ADA.
Today she continues her work in the field as a Regional Director of Care Pathway Education for a global biopharmaceutical company that develops medicines for diabetes and other chronic diseases.
Diabetes is a family journey
Johnson’s journey recently led her from St. Petersburg, Florida, to Birmingham, Alabama, to be close to her daughter, Ava, who is majoring in nursing at the University of Alabama (UA) in Tuscaloosa, and who has a keen interest in caring for those with diabetes as a career.
Johnson said the move to Birmingham has been a blessing as she has been able to reconnect with extended family who live in central Alabama, where her parents and grandparents originally lived. On weekends she enjoys watching her daughter perform in the Million Dollar Band at UA and being part of her other college activities as appropriate.
Johnson described how her journey with diabetes is Ava’s journey, too, and a reason they chose to stay close geographically during her college years. The idea of helping families learn how to encourage and support each other in their journey with diabetes has been a key message in Johnson’s advocacy, and the topic of books she has written.
She said all too often families focus on the numbers and metrics of diabetes but not the emotions underneath. Words of encouragement from her own parents helped her build resilience throughout the years to be able to handle the tough days of managing her disease.
“Don’t underestimate the power of telling your Type 1 that you’re proud of them and you see them on their journey,” Johnson said.
She also said it’s important to realize one’s journey with T1D isn’t in isolation.
“The people who surround the person with Type 1 are also on a journey and that journey involves a lot of emotion and a lot of psychosocial impacts,” she said. “We have to acknowledge and see those to be able to cope well with them. That open communication and being able to talk about where we are struggling, helps everyone get better.”
Finding high-quality care at UAB
Moving to a new state also came with the critical decision of where Johnson would go for medical treatment. She asked her connections in the diabetes nonprofit community for recommendations, and they all pointed her in one direction—the University of Alabama at Birmingham (UAB).
“The most stressful part of moving was making sure that I could receive high-quality care and that I could connect with a medical team that would understand my needs but also be innovative and cutting-edge and on the forefront of technology and therapy,” Johnson said. “Those were the things that were super important to me. Without exception, they all told me to go to the UAB Diabetes Clinic, and I got a specific recommendation to see Dr. Ovalle.”
Fernando Ovalle, M.D., is a Professor of Medicine and Director of the Division of Endocrinology, Diabetes & Metabolism in the UAB Heersink School of Medicine. He is also an associate director at the UAB Comprehensive Diabetes Center.
“It’s been remarkable to learn about the work and research that is being done at UAB,” Johnson said of her visits with Ovalle and other UAB Medicine care providers. “I did not know about that before I became a patient, so it’s become even more exciting to know that I made the right choice.”
Johnson has been an early adopter of the latest advancements available to manage her condition and has seen diabetes technology and treatment make great strides in the last three decades.
She keeps a box of the various treatments she has used since she was diagnosed. Her first insulin pump, worn during competition, is now part of the Smithsonian Institute’s permanent collection of historical artifacts, allowing her another way to educate others about T1D for years to come.
Looking ahead to the future, Johnson shared her hopes for the scientific community to improve T1D prediction and early intervention to reduce trauma at diagnosis and help people live the lives they desire.
“Knowing earlier, faster, quicker, and being able to act on it, helps our bodies stay whole for longer and helps them operate so that the joy of life is not impeded by diabetes,” she said. “I want people to have a wonderful life experience. And information earlier and faster is what will help us be able to make decisions so that we can live the lives we desire.”
And that is a life Johnson will never give up on.