College, a period of transition between high school and the real world, is a hectic time for many young adults. Students must learn to adjust to a new environment, more rigorous coursework, and extracurricular activities, while balancing it all with a social life.
Can it get any more complicated? Well, for students living with type 1 diabetes, they must also also think about monitoring and managing their type 1 diabetes amidst the college lifestyle.
A fairly new organization, the College Diabetes Network, offers students encouragement and support by connecting them with other diabetics on campus.
So today we bring you a very interesting interview with Christina Roth, the founder and president of College Diabetes Network. She was diagnosed with type 1 at 14 years old and founded CDN when she was a junior at the University of Massachusetts Amherst. Christina’s story illustrates the power of one person’s dream and how with dedication and hard work it can inspire a movement that unites and encourages others.
Stoyan: In your biography, you share that you were diagnosed with diabetes at 14 years of age. How well do you remember life before diabetes?
Christina: I remember a lot of it, but particular things stand out to me now that I have diabetes. Before diabetes, I had a general lack of awareness about food. Looking back, I realize how easy my life without diabetes was! I was a very athletic and healthy person, but before diabetes, I loved Coca Cola, and now all I can think is that I was downing 60g of carbs in a few minutes, and that just seems crazy to me now! I also used to be completely needle-phobic. I would pass out just from the sight of a needle, whether I was the one getting the shot or a vet was giving it to my dog.
One vivid memory I have from before I was diagnosed was when I was in middle school. One of my classmates was giving a presentation about diabetes in health class, as she had diabetes herself. I remember saying “I could never do that! I hate needles!” Oh how times change! I remember being in a state of complete ignorance, which I think helps me to handle the same sorts of statements and comments from people now. They are still frustrating, but having been in their shoes at one point, I understand why they say the things that they do.
Stoyan: What are the biggest personal frustrations you still experience with diabetes – and do they get easier to live with over time?
Christina: I can honestly say I went through some hard times with diabetes, but luckily becoming more involved within the diabetes community and connecting with other people who have diabetes has dramatically changed a lot of my outlook. For example, for many years I thought I would never be able to have children, this devastated me even at the age of 14. Since then, I have been lucky to meet many women with diabetes who have had healthy kids who are doing great!
I think the hardest part about diabetes is the nature of it being a chronic illness, and one that you have to deal with constantly. It never goes away and there are no vacations; that realization is a tough pill to swallow. Through connecting with other people with diabetes I am able to find the humor in what we deal with which helps to keep me from getting too burnt out.
Stoyan: Considering how many type 1 diabetics there are in the U.S (close to 3 million) and many of them are young adults, why do you think colleges lack a better support system for those living with the condition?
Christina: I think that the biggest reason for this is a universal problem, which is lack of time and money. Everyone these days is stretched thin, so [diabetes is] a “silent” disease. With limited resources, it doesn’t take precedence since it is out of sight, out of mind for those that don’t live with it. Money for programs and support is spent on other issues which get more attention, and have a larger population.
The second big reason goes along with this, and that is a general lack of awareness about Type 1 diabetes and what it actually entails. People do not understand the scope of what diabetes is and all the work that has to go into managing it properly.
We hope that CDN can become the collective voice to this population, one that can speak for thousands of students across the country. We want to create awareness on all campuses, many of whom may have only a handful of students with diabetes. Without that collective voice, it is hard to get administrators to take notice and take any changes seriously, as understandably they have other concerns which also require their attention.
Stoyan: Were there other support network groups that served as a guide for the CDN?
Christina: I had never anticipated CDN becoming a large organization, when I started it I was just looking to get a group of students on my campus together so we could all connect. I had heard that Harvard University had had a group of students a while back, but when I tried looking for it online, the website was several years old and all of the contact information led to dead ends. This highlighted the need to make the group I was starting sustainable even after I graduated, as well as the need to have a way to keep the contact information up to date.
Other than that, CDN hasn’t had a clear vision of where we would end up as an organization until the past year. We have evolved organically into what we are now based on the needs of the population that have become apparent during this evolution.
Stoyan: How large do you want the CDN to grow? What kind of feedback have you received from fellow diabetics?
Christina: CDN has already grown far beyond my wildest expectations. The more feedback we receive from students the more glaring the lack of resources for this population becomes. From the numbers, we can assume there is at least one Type 1 diabetic on each college campus, probably feeling like they are the only one going through the stress of having diabetes in college. Because of the dire need, CDN has the potential to touch every campus in this country and around the world. My dream would be to see this organization become internationally recognized as the number one resource for college students living with Type 1 diabetes.
Stoyan: What do you focus your advocacy efforts on? What is the most important piece of advice you would give for students who want to raise awareness for type 1 diabetes?
Christina: We focus our efforts on reaching out to students and supporting them. We want to give them the resources that they need to make their groups successful, and to enable them to advocate in whichever way they feel is best in their community.
The most important advice I would give students who want to raise awareness for type 1 diabetes is to reach out to friends and contacts, and to not get discouraged or overwhelmed. The hardest part is getting started! If you’re on a sports team, get them involved! Reach out to student groups, teams, and classes that require community service time. Or to other individuals who have a connection to diabetes. The other piece of advice is to share what you are doing with CDN so we can showcase it for other chapters to see!
Stoyan: What is your definition of a cure?
Christina: This is always a difficult question. Nobody wants to give up on a cure, but to me, a cure means getting rid of this disease on every level. I do not foresee my definition of a cure being attained in my lifetime. However, I do see advances in therapies that could improve my quality of life now and in the future. I have been diabetic for 8 years, and there have already been incredible advances in the technology and therapies that are now available to me. It sounds funny to say, but I feel like I was diagnosed at the right time. Historically, type 1 diabetes was debilitating, but now I can at least say that I feel confident in having a “normal life” with diabetes in a way that was not possible years ago.
Stoyan: From your interaction with college students from across the country, how do young people view the fight for a cure? Do they believe we might see one achieved soon, or are they more concentrated on surviving and living in the now? What are your views?
Christina: College students, like all people living with diabetes, run the spectrum. But from my experience, I think college students view the cure as being in the very distant future if at all in their lifetime; they concentrate more on surviving and living in the now. There is a lot of amazing research being done, but young adults usually like to know more about what actually applies to their lives, and realistically what they can expect to see (and when they can expect to see it).
