Opinion: Students with Type 1 Diabetes Need More Support

Christina Roth / September 29, 2017

The College Diabetes Network’s Off to College program helps students and parents deal with transitional stress

The college transition can be tough for anyone: grappling with a new environment, new friends, new classes, and newfound independence all at once isn’t easy. For students with type 1 diabetes (T1D), this transition can be even more complex, as they deal with a whole other set of questions: “How do I talk to my roommate about my diabetes?” “How will I talk to my professors about how high and low blood sugar can affect my academic performance?” “Who will wake me up in the middle of the night if I have low blood sugar?” “How do I drink safely with diabetes?” Many people don’t know what T1D is, let alone why it might be tough for a college student to manage this complex chronic illness while also adjusting to college life.

The College Diabetes Network (CDN) is a nonprofit whose mission is to provide innovative peer-based programs that connect and empower students and young professionals to thrive with diabetes. Each spring and summer, as a new class of students makes their college decisions and begins to prep for the transition, CDN receives the same set of questions from young adults and their parents about how to safely and successfully transition into college.

To answer those questions, we at CDN created the Off to College program. Through events and guidebooks, the program helps students and their support networks navigate the transition.

Before CDN, there was a lot of anxiety around these topics, but not a lot of answers. Although there were resources for children and adults, college students were a neglected population. It’s no wonder that 71 percent of students currently report difficulty managing diabetes in college. Living with T1D is a nonstop job. The autoimmune disease prevents beta cells in the pancreas from making insulin, which affects the body’s ability to process food and turn it into energy.

A person with T1D spends several hours per day managing the disease. Anything from food — even a simple cup of coffee, to stress, a cold, or exercise can impact blood sugars for those living with this chronic illness. All of these variables can come to a head during the college years between finals, dining halls, and all-nighters. Managing a disease that makes you feel “different” and alone is often not on the top of most T1D college students’ to-do lists. Not managing this disease can create long-term negative health effects, which is something that is often hard for young adults to fully grasp when distracted by all that is happening during the college years.

CDN created the Off to College program to support this population. The first phase of this program was a guide and handouts for clinics, nonprofit organizations, and hospitals to use to host Off to College events for high school upperclassmen and their parents. Based on the positive feedback of the handouts, CDN turned the information into audience-specific booklets – one for students and one for parents.

Pooling the expertise of CDN students, our Clinical Advisory Committee, and partners to create these materials, we have created a gold standard of information and support for young people with diabetes going through this life transition. We help simplify the transition to college and keep students safe while also allowing them to gain autonomy over their T1D.

Managing T1D as a young adult raises questions about psychosocial concerns, management, and personal independence. CDN has heard success stories from several families that they use these resources as a guide from day one when their child with T1D starts the college search process, all the way through when they move in, and continue to use it to navigate tough questions and scenarios throughout the school year. The guides have helped parents know when to ask their child about their diabetes and how much involvement they should have in their care.

For students with T1D to manage the transition from home to campus, everyone in their support network needs to be working in tandem, including their parents, clinical team, campus administration, and peers. The hosting kits and books include information on how to best communicate about T1D with young adults while they are on campus, common issues parents face when sending their T1D child to college, how to approach collaboration on their child’s care, and how to make sure their child utilizes resources on campus, such as disability services or registering for accommodations.

Based on feedback from clinicians, CDN will be launching clinician-specific handouts this year that cover some “touchy topics” that can be difficult to discuss with patients, such as relationships, drinking, and drugs.

CDN is proud of the impact it has already had on students and their families. Recently, a CDN parent emailed our staff to say they heard CDN was impacting families’ decisions about where to go for school.

“High school seniors and their parents are factoring CDN into their college decision making process,” they wrote. “Now, you just need to get CDN into every college in America, so kids with T1D can go to the college of their choice!”

College is a time for experimentation, growth, and transformation. CDN works to ensure that those living with T1D on campus are able to experience everything college has to offer, from living in a dorm to trying new classes to studying abroad, all without their diabetes getting in the way.

By helping these young adults successfully transition from home to campus – and then to the workplace – CDN is ensuring the next generation is ready to be empowered diabetes advocates.


 

If you are interested in receiving the Off to College Booklets for parents and students, you can preview our Student Booklet here and our Parent Booklet here, and request a digital download of the booklets here.

Christina Roth is the Chief Executive Officer and Founder of CDN. Diagnosed with type 1 diabetes at age 14, Christina became an active patient advocate while in college where she started CDN as a campus group in 2009. Due to the overwhelming response to the initial group, Christina expanded CDN into its current form — a national non-profit organization serving young adults with type 1 diabetes.