For young adults living with diabetes, preparing for college can be a difficult time. Managing diabetes while trying to make sense of a new world, social network and expectations can be especially challenging. You’re not alone! There are many resources in place to help support this transition.
The following are stories shared by College Diabetes Network (CDN) Students, involved in CDN’s Student Advisory Committee (SAC), about their experiences heading off to college, and navigating life on campus, with diabetes.
The College Diabetes Network provides programs for young adults with diabetes to help make their college experience safer and more successful. The American Diabetes Association is working with CDN to help further this goal.
Name: Eddie
School: Boston College, Class of 2016
I was diagnosed with type 1 diabetes at a young age. Although my college transition didn’t have too many obstacles, for others it may present many difficult changes and intimidating environments. For students living with type 1 diabetes, many of these experiences hold unique consequences, consequences other students may not be able to relate to. Diabetes management during finals, food intake, alcohol consumption are just some of the examples we have to consider.
I applied exclusively to colleges close to home, as I wanted to stay in Boston and continue my care at the Joslin Diabetes Center. This way, I figured I would have easy access to all the medical resources I might need while living at college.
I also had a very strong support group. My mother and endocrinologist were very helpful, as they made sure I was fully stocked with everything I needed at school on a consistent basis. The Dexcom with Bluetooth and Share changed my life; I consistently feel comfortable about my blood glucose monitoring wherever I am.
In the past I’ve had the privilege of working with numerous organizations including the Association, JDRF, Camp Joslin and Beyond Type 1. I’ve had numerous roles, ranging from blogging and public speaking, to fundraising and leadership. And now serving as CDN chapter leader, I look forward to raising more awareness about this disease.
The CDN is a unique opportunity to link with the type 1 community on campus and to further increase campus awareness about diabetes. It’s incredible to have a community on campus with which you can discuss the trials of college, whether they are academic, personal or medical. My goal is to fuse the type 1 diabetes community with the larger type 2 community so people can be educated more about diabetes and how it affects us all.
If you live with diabetes or any other chronic condition, I would strongly recommend letting your roommates know about it, educating them and getting them involved. In addition to teaching them the basics, I show my roommates and friends everything. I explain where it all should be and how the math all works out. By now my closest friends know the blood glucose-testing and carb-counting drill well. In case of emergencies, they all know where to find and use glucagon kits. Even if I never have an emergency, it’s very important knowledge.
And still, everyone thinks my Dexcom is an iPod. I assure them it doesn’t play music.
I juggle many things on top of diabetes. I play lacrosse at school, which makes life a bit more difficult. Late practices can complicate my sleep schedule and blood sugars, so I do lose sleep on a regular basis. Learning how to balance everything has been difficult, but I’ve managed so far.
Diabetes management and anxiety can take a very significant toll on you — it’s something that needs to be addressed more than it is. Too seldom do we take the time to slow down and recognize that the management of our disease is difficult and extremely stressful. Our whole person, every element of our lives, can be dramatically affected by our relationship with our disease. To effectively manage diabetes, we need to identify how it worries us and how we might combat those concerns, especially in the college environment.
If you’re heading off to college, I would suggest moving slowly into everything new. It’ll be a tremendous experience, but don’t feel like you have to assimilate right away. Just because everyone else participates in some activities, especially those that involve alcohol consumption, doesn’t mean you have to dive in headfirst.
You can do more for yourself and your own well-being by practicing restraint. Finding others who practice the same restraint might help keep your spirits up.
The College Diabetes Network (CDN) is a 501c3 non-profit organization, whose mission is to use the power of peers, access to resources, and grassroots leadership to fill the gaps experienced by young adults with diabetes and make their college experience safer and more successful. CDN’s vision is to empower young adults with diabetes to thrive in all of their personal, healthcare, and scholastic endeavors. CDN has over 80 campuses with 60+ affiliated chapters. Sign-up for more information here.
Diabetes Forecast magazine and the College Diabetes Network recently published a “Thrive Guide for Young Adults” with tips for doing college with diabetes. Visit diabetesforecast.org and diabetes.org for more information.
Cassidy about one week before she was diagnosed.
My daughter Cassidy was 16 months old and still in diapers when we started to suspect that something wasn’t quite right. My husband and I didn’t know what to do or think, but we knew something was wrong.
Cassidy was an early talker, and each morning we found her standing up in her crib telling us “Cassidy thirsty.” She kept drinking and drinking—and she was very hungry, too. She kept wetting through her diapers, clothes and bed sheets.
Deeply concerned, we took her into the pediatrician three weeks in a row. Our regular doctor happened to be on medical leave during this time, so we saw other doctors who weren’t as familiar with her history. At one appointment, she was diagnosed with an ear infection. At others, we came home without any diagnosis. No one asked specifically about her symptoms of increased urine and thirst, and while we thought we were communicating effectively, perhaps we weren’t. As first-time parents with no experience in the medical field, we were quick to chalk it up to our own inexperience.
Things escalated on an airline trip with Cassidy. We lived in California at the time and were flying home to Los Angeles. During our trip, she had been extremely hungry and thirsty, and on the two-hour flight, she wet through her diaper, clothing and the cover of her car seat. She was very fussy as well. As we landed at LAX, I turned to my husband and said: “This can’t be normal. Something just isn’t right.”
My mother turned out to be the first person to “diagnose” Cassidy. An attorney, she has made a long career of defending school systems. She is very familiar with Section 504, the federal civil rights law that prohibits discrimination on the basis of disability, and the rights of students with diabetes.
I called my mom to tell her about Cassidy’s health problems. “Sounds like diabetes,” she said, urging us to visit the doctor again right away.
At the time, type 1 diabetes just wasn’t on my radar. There was a very short section about it in my dog-eared copy of “What to Expect the First Year” that I looked up after my talking with my mother.
Cassidy’s symptoms worsened. By the time of our appointment, she was stumbling, vomiting and having trouble breathing. At check-in, we told the clerk we thought she might have diabetes. She replied that Cassidy was probably “too young.” They sent us down to the lab for bloodwork, but she was so dehydrated they were having trouble finding a vein.
Then, almost out of nowhere, appeared a doctor whom we had met briefly upstairs and who knew what was wrong. He came running over, grabbed Cassidy and told us to follow him. “She’s really sick. Do you want to go to the intensive care unit by helicopter or ambulance?”
I still didn’t know what this type 1 diagnosis meant or what we were facing. In the ICU, we were told that Cassidy’s blood glucose was so high that she was experiencing diabetic ketoacidosis (DKA), a condition that can lead to diabetic coma or even death. The nursing staff allowed us to stay at her bedside, and although she had IVs in both arms held in place by splints, we managed to take turns holding her through the night.
By the next day, she had stabilized and was soon moved out onto the hospital floor. It was during this time that we embarked on our diabetes education, meeting with doctors, nurses and dietitians to learn about the disease and how to manage it with injections and a fixed meal plan. Within six months, we had learned to count carbohydrates and Cassidy started using an insulin pump, which was a better fit for a toddler’s lifestyle.
Though we have adapted to life with diabetes—it will be 14 years in April 2016—I will never forget how scary that experience was. It’s not something you ever want to go through as a parent. I so wish that Cassidy’s type 1 had been picked up sooner.
Cassidy in action on the volleyball court.
Now Cassidy is a happy 15-year-old. She has never been back to the hospital for diabetes care—even when she came down with rotavirus a few months after developing type 1 (now there is a vaccine for it). She uses an insulin pump and CGM (continuous glucose monitor) most of the time, but sometimes she prefers injections. She is very independent with her diabetes management and not at all shy or embarrassed about her diabetes. Perhaps her openness has allowed her friends and their families to be involved and supportive. We have learned that with the right support, you can manage diabetes, even with its inevitable ups and downs.
Cassidy is an excellent student and an active teenager who plays volleyball, and is involved in theater and dance. She loves diabetes camp and we attend the Children with Diabetes Friends for Life conference every summer in Orlando. I’d say she is a very good everyday champion for this disease—she just lives her normal life, and diabetes comes along for the ride.
A diabetes diagnosis will always be a serious event, but it doesn’t have to be the bad start that ours was, or worse. With a very heavy heart, I acknowledge that some families have not been so fortunate. I channeled the trauma of almost losing Cassidy at diagnosis into raising awareness about diabetes while simultaneously raising money for diabetes research.
Then, on a typical drive to school one day in 2007, Cassidy innocently asked: “Mommy, what are you doing to cure diabetes?” After sitting lost in thought in the parking lot, I resolved to dedicate my professional life to type 1 diabetes care, research and advocacy. I am proud to have volunteered with the American Diabetes Association® in many capacities over years—and now to help them raise awareness of this very important issue.
I have learned that there are many reasons why hyperglycemia, or very high blood glucose, can be missed in children. There are many other health problems it can be mistaken for—the flu, for example. But this doesn’t have to be the case.
Type 1 diabetes onset is acute, and the signs and symptoms can be dramatic. Parents, teachers, daycare providers, camp counselors—anyone who cares for children, both young and old—should know the basics.
The same goes for all health care providers, especially in the primary care and emergency care settings, who should take a full health history of the present illness. Considering cases of type 1 diabetes have increased dramatically in the last 20 years, it should be on their list of possible diagnoses in patients who have even one of the symptoms. Providers also shouldn’t assume that parents will know to volunteer this information.
To all the parents out there: Be aware and speak up for your child. When you know something is just not right, trust your gut. If your child isn’t acting normally, suddenly wetting the bed, showing signs of the flu—take him or her in to see the doctor. Report everything that you’re seeing at home, so they have the full picture. Be a partner in your child’s health. Maybe it’s serious, maybe it’s not, but you need to find out.
We need to get to the bottom of these cases faster, so we can avoid the progression to life-threatening DKA. The sooner type 1 is diagnosed, the better.
Anastasia Albanese-O’Neill, PhD, ARNP, CDE, is an assistant professor of nursing at the University of Florida in Gainesville, as well as a practicing nurse and diabetes researcher. A longtime volunteer for the American Diabetes Association, she currently serves as co-chair of the Safe at School Workgroup and also sits on the Association’s National Advocacy Committee, Legislative and Regulatory Subcommittee and Volunteer Engagement Workgroup. She and her family live in Gainesville, Florida.
