For young patients who have diabetes, managing the disease as part of their daily lives is an all-encompassing challenge, says Maggie West, lead nurse and a pediatric diabetes nurse educator with the Johns Hopkins Pediatric Diabetes Center at Johns Hopkins Children’s Center. “There’s never a moment when our patients or their parents aren’t thinking about their blood sugars,” she adds. “It affects every single decision they make.”

West knows this firsthand: She was diagnosed with type 1 diabetes when she was 13 years old. Fortunately, West had a pediatric diabetes nurse educator who changed her outlook on living with the disease. West struggled with assigning moral value to her blood sugars — she thought the numbers were a reflection of how much she cared and how hard she was trying, as well as her future success in general. Her nurse educator, who also had type 1 diabetes, consistently reinforced the message that her blood sugars do not correlate with being a good person. It was a lesson West needed to hear and one that she tries to instill in her patients and their families today.

“If I didn’t have this experience with a pediatric diabetes nurse educator, I think I would have a very different nursing career,” says West, who has been in the field for six years. “I felt she understood [me] in a way that other clinicians just couldn’t. And back then, it was really important for me to see an adult with type 1 diabetes who was thriving.”

At the Children’s Center, West is one of four pediatric diabetes nurse educators who were drawn to this specialty because of their personal connection to the disease. Like other nurse educators, they teach young patients and their families about diabetes care technologies, pharmaceuticals and more, and offer support in incorporating blood sugar checks, insulin administration and diabetes management into everyday life. But these nurses are also able to draw on their own experiences coping with the disease, which often allows them to build deeper connections with their patients.

“Our diabetes nurses serve as the cornerstone of our diabetes program, playing a pivotal role in supporting our patients and their families,” says Risa Wolf, director of the Pediatric Diabetes Program. “These nurses’ personal experiences in managing their own or their child’s diabetes provide a shared experience and empathetic connection to the challenges our patients face. Their unique perspective equips them to provide even more compassionate and effective care to our young patients and their families.”

“Our diabetes nurse educators are special people,” adds Sheela Magge, director of the Division of Pediatric Endocrinology. “Not only are they experts in the technical aspects of pediatric diabetes care, but they also draw from their own experiences with diabetes to provide exceptional and compassionate care for families whose lives have been turned upside down by this disease.”

Tacy Surrett, who was diagnosed with type 1 diabetes when she was 6 years old, remembers what it was like to navigate school while trying to manage the disease. When she needed to leave the classroom to correct her blood sugars, she says, “I ran into some misunderstandings with teachers, staff and friends.” At various times throughout her youth, Surrett, who attended schools in England, Germany, Turkey and Maryland, ultimately created a PowerPoint presentation to educate her various school communities on type 1 diabetes. This experience helped her understand some of the social challenges her patients might face. 

Surrett, who joined the pediatric diabetes nurse educator team in July, is also able to share her experience with diabetes tools. She has tried several types of insulin pumps, which are small devices that can be programmed to release insulin into the body through a tiny catheter. She is also familiar with administering insulin through injections, a method that about 20% of the Children’s Center’s patients still use. Surrett was even able to model the use of the Dexcom G7 continuous glucose monitor with a patient who was unsure about using it. “We both inserted our monitors at the same time, and it was such a beautiful moment,” she says. 

For Cathy Evason, pediatric diabetes nurse educators were vital in teaching her how to navigate this disease as a parent after her son, Ethan, age 11 at the time, was diagnosed with type 1 diabetes in 2013 and subsequently treated at the Children’s Center. Blood sugar that is too high or too low can lead to serious complications, such as seizures and diabetic ketoacidosis, which can be life-threatening. Many factors, including excitement, stress and external temperature, can cause blood sugars to dip too far in either direction. Through the educators, Evason learned how help her son manage his diabetes in different environments, including in school, on the sports field and at friends’ houses.

“I was constantly worried,” says Evason, who practiced in general pediatrics as well as in school and camp nursing before joining the Children’s Center in 2023. “I was in touch with the pediatric diabetes nurse educators constantly. My experience with them was so great that it was important to me to pay it back.”

Amanda Palmer felt a similar pull toward the diabetes care field after her son, Elliot, was diagnosed with type 1 diabetes at age 3 in 2011. Then, Palmer was an infectious disease epidemiologist who was preparing to go to nursing school. As the parent of a child with a chronic disease, she has been through some challenging times, including the three months when she and her husband took turns going to her son’s preschool every weekday during lunch to administer his injections. She also knows what it feels like to be continually fearful about her child’s health, which helps her develop a connection with other parents.

“I can understand what it means when the continuous glucose monitor goes off at night, and it wakes you up and you have a moment of panic,” says Palmer, who worked in pediatric diabetes care at the University of Maryland for three years before joining the Children’s Center in 2022. “I think my families understand that I ‘get it’ maybe more than somebody who hasn’t had that same lived experience.”