Each year over 7,000 young adults with type 1 diabetes begin college. In many cases, the transition from a home setting with parental supervision to the college environment is overwhelming. Christina Roth, who was diagnosed with type 1 diabetes at the age of 14, learned this when she enrolled at University of Massachusetts Amherst in 2007. Though Christina was managing her diabetes quite well, two years into her studies, she had serious case of diabetes burn out. A nurse practitioner suggested Christina get together with some of the other diabetics on campus. From there the idea for the College Diabetes Network (CDN) was born.
The College Diabetes Network is a national non-profit organization that addresses the unique challenges facing college students with type 1 diabetes, from access to better health care and resources, to creating a community that understands and supports the disease. The College Diabetes Network’s mission is to empower and improve the lives of students living with type 1 diabetes through peer support and access to information and resources.
CDN started as a single chapter in 2009, grew to four chapters in 2010, and by the end of 2011 there were 21 chapters listed on the CDN website. With a chapter base growth of 525% in just two years, the need for a college diabetes network is clear. I had the opportunity to talk to Christina about the amazing work she’s doing, helping and supporting students with diabetes all across the nation. In addition to being president of the College Diabetes Network, Christina is working as a research assistant in pediatrics at the Joslin Diabetes Center in Boston.
When were you diagnosed with type 1 diabetes?
I was diagnosed as a freshman in high school when I was 14. I was pretty lucky. My mom is a nurse and she recognized the signs pretty early. I happened to be diagnosed on Valentine’s Day. My mom had taken me to the barn to horseback ride, where I dismounted several times to run to the bathroom. That, combined with having lost about 15 pounds, and my friend’s joking complaint that I “always needed to pee” set off the red flags for my mom.
Like most people, my diagnosis came as a shock to me. For the first six months, I “took charge” but once the novelty wore off, I became burnt out and had a hard time managing my diabetes.
What were the biggest changes in your life after diagnosis?
The biggest change in my life after diagnosis was the loss of independence and control. I was an independent 14 year-old, and didn’t want anything to do with my parents. After diagnosis, my mom was understandably concerned and wanted to keep tabs on me, which was hard to readjust to.
At college, I was pretty independent, but my mom was (of course) still worried. We came up with a “contract”, during my freshman year. I would talk to my mom in the morning when I got up and tell her what my blood sugar was, after that she wasn’t allowed to ask me, unless I was sick. As long as I kept in contact with my nurse, my mother promised to keep her distance. It wasn’t until I sat down with her to write the original CDN webpage for parents that I realized how hard it was for her to restrain herself, and to keep from asking me about my blood sugars all of the time.
Leaving for college was a big transition, as it was the first time that I didn’t have my best friends around that I could vent to about my diabetes. Even if people knew I had it, they didn’t “get” it. As a result, my relationship with my mom changed a lot. I found myself relying on her as an outlet and for support, and not just seeing her as someone to fight against.
What was the transition like, going from home to a whole new world with a complicated chronic illness to manage on top of everything else?
For me the transition was probably pretty typical for most college students: at first diabetes was still not in the forefront of my mind. But of course, when you are trying to ignore diabetes, it has a way of making itself known. It came down to having to take care of my diabetes in order to keep it from interfering with my life and keeping me from experiencing my college years to the fullest.
Part of this came down to having the tools that I needed to manage my diabetes successfully. For me, that included a continuous glucose monitor (CGM), which I had recently started as a part of the JDRF study being done in Boston. This helped to not only give my mom peace of mind, but gave me more information to work with. The second piece to this was getting the support to keep me motivated to keep taking care of myself, even when I was burnt out. I started to find that support through CDN and all of the people on campus that CDN introduced me to.
Once I figured out how to balance diabetes with the rest of my life, I became more successful. All of the work that went into managing my diabetes really made me want to take advantage of any opportunities open to me. Without that control, I would have missed out on two of the best experiences in college: riding on my school’s Dressage team (a type of horseback riding) and studying abroad in France.
When did you come up with the idea for CDN?
I started CDN during my junior year of college. I had met a nurse practitioner on campus the year before, and once she saw how burnt out I was, she suggested that I bring a group of students together, as many of the other students with diabetes that she saw felt the way I did. Diabetes was personal to her since she had had type 1 for over 30 years before getting a pancreatic transplant.
Before CDN, I had never really connected with other diabetics before, and I never anticipated CDN becoming anything more than the small student group that we started. However, as word began to spread, and the more I talked to people about it, the more I realized the need for this organization. CDN is truly a collaborative effort from students across the country addressing the current needs and lack of resources for their population.
What role does CDN play in the diabetes community?
CDN helps to fill the current gap in resources and support for young adults with diabetes, and their parents. The diabetes community has great resources for children and their parents through organizations such as JDRF, ADA, and Children With Diabetes, but there are no targeted resources for young adults, particularly college students. These individuals are leaving home and their support systems for the first time, living in a place where people may not know the first thing about diabetes, and in an environment which make diabetes extremely difficult (no routine, pizza!, stress, etc.). On top of all this, many students at this time in their lives lose touch with their healthcare team, or transfer to a new one.
What’s the focus of the chapters? Support? Activities?
Each of our chapters is different, and is formed around what their members want and need. Many of our chapters will get together and talk, bring in speakers, bring in reps from pump and CGM companies, and connect with their local communities. Many will also have fundraising or awareness events on campus, as well as have other activities apart from diabetes, like rock climbing.
Do the chapters run independently? How involved is CDN with the chapters? Is there training for chapter leaders?
As the chapters are based on peer support and empowerment, they run and oversee themselves. CDN supports them in whatever capacity they need, for some it is more intensive than others. We recently added an amazing new member to the CDN Team, Jo Treitman, who has taken over as Chapter Coordinator. Jo had started a chapter on her campus as Wellesley College and since graduating herself, talks with all of our chapters and helps them through whatever stage of development they are in. Down the line we would like to offer leadership training for chapter leaders, however we don’t have the resources to do so right now.
Does CDN cooperate with campus health services?
One of the first things that we suggest to chapters is to encourage them to establish a relationship with their campus health center. Many times that is the best place to start looking for individuals who might have an interest in diabetes, and to get help referring students to the group. Some health services will send an email out to students on campus telling them about the new CDN chapters, and others will help by providing meeting rooms, faculty sponsors, and support.
Christina Roth Fun Facts!
Hobby: I’ve ridden horses all my life
Favorite color: purple
Diabetes Regimen: Pump, CGM, Symlin
Number of BG checks per day: depends, thanks to the CGM! At least 6
Low treatment of choice: dried apricots
Diabetes research she’s interested in: Faster acting insulin. Dual hormone pump.
Jessica Apple is co-founder and editor-in-chief of ASweetLife. She writes the blog The Natural Diabetic.