For Amanda Rossi, a freshman biology major at Fordham University, diabetes is nothing new — she was diagnosed with type 1 when she was just two and a half years old. What was new, however, was venturing out on her own when she fi nally left her parents’ house in Woodbridge, Conn., to start college in New York City.
“Being away from my parents is hard. I miss having them here to give me a pat on the back, but I especially miss them checking up on my diabetes management,” Rossi explains. “I no longer have the luxury of having someone to check my blood sugar in the middle of the night. If I go to bed with active insulin, I’m responsible for making sure I don’t go low.” Rossi adds that when she lived at home she would explain her concern about going low in the middle of the night to her mother who could check on her at 3 a.m. “Of course, I can set my own alarm and check myself,” she says, “but what if I don’t get up?”
She explains that there have been nights in the past where her insulin levels have been too low to get up and get something to treat herself with. “And when that situation arises, I yell for my mom and dad, and they come running, apple juice in hand,” Rossi says. “I have learned that I have to take care of myself and make sure I have low supplies next to my bed at all times.”
Rossi is not alone. According to an article in a 2003 issue of Diabetes Care, each fall 2.3 million freshmen enroll in U.S. colleges and universities, with an estimated 7,700 of whom are living with type 1 diabetes. However, making this transition to adult care is not something that takes place the day after a child turns 18; it is an ongoing process that should feasibly begin with the pediatric healthcare provider around age 12, according to an article published in June 2011 in Pediatrics, but there are exceptions for children with chronic conditions. “Children and youth with special healthcare needs and their families may benefi t from discussions regarding adult transitioning that begin earlier than 12 years of age,” the article states, adding that “some children with chronic medical conditions (e.g., asthma or diabetes) may be introduced to developmentally appropriate self-care at ages younger than 12.”
Ready or not, for many young adults living with a chronic condition, cutting the apron strings can be somewhat daunting. Aside from the usual issues of moving, starting college, or a new job, going through these already stressful life events are magnifi ed when you’re dealing with an ailment that requires constant management.
Easing the Transition Online
Now those young adults can simply go online for a number of tools that can make the transition from parental supervision to overseeing their own care go much more smoothly. Th e Transitions of Care initiative (www.endocrinetransitions.org), spearheaded by the Endocrine Society, was created to help young adults who have hormone conditions navigate the shift from a pediatric to an adult healthcare team and off ers resources for young adults, their parents, and healthcare providers.
“The transition to emerging adulthood, no matter who you are or where you are, is difficult; you don’t want to do kiddie things, but you’re not prepared to be an adult,” says Alan D. Rogol, MD, PhD, a professor emeritus at the University of Virginia in Charlottesville, and a member of the Endocrine Society’s Transitions of Care Task Force. “Add a chronic illness on top of that and you have even more responsibilities, especially if your parents monitored your glucose and you were just the passenger. All of a sudden you have to take care of yourself, and you have to fi gure out how to fi nd a doctor, get a prescription filled, deal with insurance. These are things the average teen doesn’t have to deal with. It’s an added burden.”
The Transitions of Care website includes assessments to help young adults and their healthcare providers assess how ready patients are to independently manage their care and to identify patients’ biggest worries. Toolkits with specifi c guidance for people with type 1 diabetes and growth hormone defi ciency are currently available on the site. The type 1 diabetes toolkit incorporates links to fact sheets on various challenges facing young adults with the condition, such as managing diabetes safely in the workplace and in a college setting.
The site also features referral forms for pediatric and adult healthcare providers to share information about a patient’s medical history. While the actual transfer may be marked by the patient’s fi rst visit to the adult care team, signifi – cant communication must take place between the pediatric and adult care providers to ensure a smooth transition. Th e Transitions of Care initiative provides the resources pediatric practices need to prepare young adults for the move to a new provider. Th e toolkits also include information to help adult healthcare providers plan for the fi rst appointment and ensure they have detailed information about the new patient.
Another tool — the College Diabetes Network (CDN) — is designed specifi – cally for college students with type 1 diabetes and provides a portal for peer support and help with access to better healthcare. Christina Roth, the CEO and founder of CDN, created it after she felt overwhelmed by the demands of both college and dealing with her own diabetes. “It was tough to stay on top of classes, work, and all of my other commitments while worrying about my diabetes,” she says. “I just wanted to talk to someone else who understood. I decided to hold a meeting for other students with diabetes who, like me, were feeling overwhelmed.”
At that fi rst meeting Roth found other students who had a lot of concerns about making the leap from home to campus while managing their diabetes. “What really surprised me was that I was getting emails from students with diabetes all over the country who were interested in starting, running, and sustaining their own groups, and who had experienced the same barriers that I had in fi nding members,” she explains. “Th at’s when it became clear to me that peer support is so vital to living with this disease, especially in environments like a college campus. And the College Diabetes Network was born.”
CDN’s newly launched website is fi lled with information for college students — especially freshmen away from home for the fi rst time like Rossi — that lets them connect with other students going through the struggle of balancing college, adulthood, and diabetes. “We’ve created a timeline of actions for students with diabetes to take when preparing to move from home to campus,” Roth says. “It includes action items such as making a plan for their diabetes supplies, preparing a sick day kit, and creating communication plans with their family and healthcare teams.” Roth adds that at the very least, a CDN chapter provides students with someone close by to call in a pinch, when they’re running out of insulin when the pharmacy is closed, have a broken pump, etc.
Due to her involvement in the College Diabetes Network, Rossi’s transition at Fordham has been much simpler because she’s had a group of people to depend on when she became frustrated with her diabetes management. “It feels so good to know that there are people here to sympathize with the (literal) highs and lows that I am going through,” she says. “People without diabetes can off er support and kind words, but they don’t quite know what it feels like to have low blood sugar when the elevator is broken and you live on the fourth fl oor of your dorm, or how irritating it is to not know if the Jell-O in the café is sugar free or not.”
— Newman is the editor of Endocrine News.