Organization supports young adults with type 1 diabetes transitioning from pediatric care
In this issue, Susan Weiner, MS, RDN, CDE, CDN, talks with diabetes awareness advocate and Miss America 1999 Nicole Johnson, DrPH, MPH, MA, about living with type 1 diabetes and empowering young adults with social support and skills development.
Why did you start the organization Students With Diabetes?
Johnson: It’s tough living with chronic illness, especially in your young adult years. The life transition from being a child to an adult is difficult for everyone but is a unique experience for those living with illnesses like diabetes that require continual attention and monitoring. There is much conflict between developing into an independent adult and the realities associated with diabetes daily tasks. It is no wonder that many young adults brush off their diabetes during this transition time. However, there are groups surfacing that have developed a magic in bringing transitioning young adults together in a supportive, nonjudgmental, modern way. It is empowerment that makes all the difference.
I was diagnosed with type 1 diabetes at the age of 19 years. It was a difficult time when I felt isolated, alone and misunderstood. I created this program to help other young adults through the challenges associated with transitioning into adulthood that I experienced. I want young adults to have what I wish I had when I was their age.
Students With Diabetes became an impressive gap-filler in diabetes. Tell us about the history of the organization.
Students With Diabetes began in 2010 as a pilot program in Tampa, Florida. I wanted to gather young adults to deliver diabetes education in a format and context they desired and would accept. The idea of a diabetes social network quickly caught on, and by 2011 we had chapters all over the Southeast. In 2011, we hosted our first weekend conference with 20 young adults. We saw the incredible need in this population and, thus, pressed forward creating programs that the young adults told us they wanted and needed, with young adults as an intricate part of the program design. Today, Students With Diabetes has a presence in over 190 communities, draws more than 150 young adults to its annual conference, and places at least 15 young adults in internships each summer with diabetes industry. Lives are being touched in an incredible, meaningful way.
What is the benefit of offering skill-building opportunities to young adults with type 1 diabetes?
In 2012, after completing an internship for my doctoral degree, I lamented that I would have much rather spent time investing in and learning about the cause I am personally connected to. It was then that the Students With Diabetes Internship program began. This program builds the diabetes leaders of tomorrow. By teaching young adults about service, professionalism, relationships and leadership, we hope to make a measureable impact on the diabetes industry and society. Harnessing the energy, creativity and skills of youth is a powerful thing. Young adults with diabetes are looking for ways to give back, while at the same time trying to create their own identity. Showing them that diabetes experience can be an asset becomes inspiring for them. I believe in teaching young adults that there is great opportunity in the midst of personal challenge. Many of the 45 young adults who have participated in this program have found their life mission as a result. That means more passion and young talent in diabetes!
Can you tell us how the organization has grown and expanded?
[In 2015], Students With Diabetes grew to incorporate a sister organization called Young Adults With Diabetes. This developed as I watched the original college-age participants graduate, find employment, yet still need social support and life stage-appropriate diabetes education. Young Adults With Diabetes is for those who don’t identify as students or those who have moved into the employment and family planning phases of life. As young adults with type 1 diabetes launch into careers, they often struggle with important questions about health insurance coverage, discrimination, employee rights and other lifestyle topics. This new organization seeks to empower with information and motivate through social support.
Besides creating impactful programs, you are an active researcher in diabetes as well. What are you working on now?
I am on faculty at the University of South Florida College of Public Health, and through this role I engage in a lot of investigation about diabetes, particularly in young adults. A study that just concluded compared perspectives on the transition experience between young adults and health professionals. We found that professionals struggle to communicate effectively with youths and evaluate family dynamics during transition. At the same time, youths have a strong need to be heard, and they lack the confidence to discuss social and mental health issues with their providers. I hope to take this information and develop interventions that will foster better relationships and outcomes for both populations. My team and I are also working on research related to family systems in diabetes and diabetes psychology.
Another area I am passionate about is building capacity in diabetes. I am committed to training young adults, but I also worry about the future of people with diabetes as the number of us with type 1 diabetes grows and the number of professionals shrinks. This year, I am coordinating a program that is training and funding five postdoctoral psychologists in a diabetes specialty fellowship. These fellows are at Harvard University’s Joslin Diabetes Center, Stanford University, Northwestern University’s Lurie Children’s Hospital, the University of Florida and the University of South Florida. The fellows are engaged in clinical care and research, which creates another layer of young professionals in diabetes with the skills necessary to lead positive change. The program will operate for 2 years, and applications are being considered for the next class of fellows now. Send CVs to email@example.com.
What are your future goals for the organization?
This year, the Students With Diabetes and Young Adults With Diabetes programs moved from the university to a private foundation, the Diabetes Empowerment Foundation. This new structure allows the organizations to develop plans for long-term sustainability and create pathways to serve the larger adult type 1 population. [In 2015], the Diabetes Empowerment Foundation launched Type We, an answer to the need for a service for partners of those with diabetes. There are many other plans for the foundation, including books, video and more. Rest assured, Students With Diabetes isn’t changing — it is growing. Filling unmet needs with creativity is a founding principle of the foundation. The mission is helping people with diabetes live positive, productive, limitless lives.
- For more information:
- Nicole Johnson, DrPH, MPH, MA, has lived with type 1 diabetes since 1993. She was Miss America 1999 and has since authored six books, raised millions of dollars for diabetes research, and created programs to serve people in the diabetes community.
- Susan Weiner, MS, RDN, CDE, CDN, is the 2015 AADE Diabetes Educator of the Year and author of The Complete Diabetes Organizer and Diabetes 365 Tips For Living Well. She is the owner of Susan Weiner Nutrition PLLC and is the Endocrine Today Diabetes in Real Life column editor. She can be reached at firstname.lastname@example.org.
Disclosure: Johnson and Weiner report no relevant financial disclosures.