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Getting Ready to Go Off to College When You Have a Chronic Disease Like Type I Diabetes

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A Huffing Post reader recently emailed me this question:

I have been thinking about my son as he considers colleges to apply to next fall. Because he has diabetes, I'm not sure what college will be like for him. What should he be looking for? What challenges will he face? How can his father and I help prepare him to live away from home?

I happen to know something about this because my daughter, Marejka, was diagnosed with type I diabetes five months before she left home to attend Stanford University. Needless to say, that was a challenging time for both my daughter and our family. After college, she completed a Master's Degree in Health Psychology at the University of Utah, the focus of which was on coping mechanisms for people with chronic illnesses. Since then, Marejka has been very active helping teens (and parents) manage life with diabetes; so I asked for her input to help answer the above query.

According to WebMD, approximately seven percent of young people live with a chronic disease, whether diabetes, Crohn's disease, arthritis or other conditions. Clearly, it makes sense for these students and their parents to think ahead about how they can best prepare for the transition from home to college.

The following is a summary of a conversation Marejka and I had about how to answer the above question. Friendly disclaimer: This is not to be construed as medical advice or in any way a promotion for underage drinking. You'll understand why I'm saying this as you read the rest of this blog.

Marjorie: Do you have any recommendations for students with diabetes regarding what to look for in a college?

Marejka: First, I think that a school with a strong, supportive residential system is a good idea. For example, it was very useful to be a part of Stanford's residential community where resident fellows and resident assistants were focused on individual students and generating a cohesive sense of community (as opposed to a college where RF's and RA's serve mainly as policy enforcers). My freshman dorm had three diabetic students; that had a dramatic effect in terms of casually educating other residents about the disease and building a collective awareness for how they could be helpful to us. Fellow residents went so far as when there was a Jello shot party, they made sugar-free Jello shots for us. That might sound minor, but I think it was a wonderful sign of support and it made us feel really included.

Marjorie: Besides Stanford, other colleges with strong residential systems are Middlebury, Michigan, UC Santa Cruz, Rice, Yale, Willamette, Vanderbilt and Vassar. There are more.

Marejka: Second, when students visit colleges and go on campus tours, they should see about stopping by the Student Health Center to find out what kind of diabetes support they offer. While there, they could also ask about other campus resources. For example, the University of Oregon Student Health Center offers a class for diabetic students, where they learn skills related to transitioning to living on your own with diabetes.

Marjorie: That's really useful information.

Marejka: Third, as diabetic students research colleges, I recommend they check out the college's disabilities resource center (DRC) on campus. Outside of student health, they're probably the next best place for help and support. Through them students can find out if there are special accommodations that cover exigencies associated with their illness: e.g., access to dining halls with healthy meal options or individualized testing if they need it. I recently spoke with a student who had to take an important exam when her blood glucose (BG) level was 350. (For readers who don't know, a normal BG level is between 70 and 120.) That was really difficult for her, because at that level her ability to think -- let alone solve problems -- was severely impaired. Some colleges may offer accommodations for known and documented health situations like that.

Marjorie: What advice do you have for parents about how to handle their diabetic son or daughter leaving home?

Marejka: Research that fellow University of Utah graduate students and I did on families with children who had diabetes showed that it's extremely helpful for parents to provide 'invisible support' to their kids in keeping their health and lives together. What this means is stay away from intrusively asking about or nagging your child if he/she is measuring blood sugar or what his/her A1c is. A better approach is to provide your teen with resources that make it easy to keep on top of their diabetes. For example, buy a medical identification bracelet (that they choose) for your teen to wear so that other people will know that he/she is a diabetic and who to call in an emergency. Parents can send care packages that contain diabetes supplies and glucose. They can also set up a mail-order system for getting prescriptions so the student doesn't have to worry about ordering and picking up insulin or test strip refills from drug stores away from campus. Another thing that parents can do is research endocrinologists in the college area should their student need to have a consultation. Also, either mom and/or dad can help establish relationships with and fax health records to doctors at the student health center and/or outside physicians.

Marjorie: Before you left for Stanford, I remember looking into the kind of coverage Stanford's health insurance offered diabetics.

Marejka: Right. Another practical tip is to make sure there is a small refrigerator in the student's dorm room, so he or she can keep their insulin close by and also stock the fridge with a good choice of healthy, diabetes-safe snacks and other food.

Marjorie: So what about the student? What can or should he/she do?

Marejka: The big thing is that a diabetic student needs to learn to be independent. He or she has to know (or learn very quickly) how to take care of him or herself. Having said that, it should not come as a surprise that I don't necessarily recommend that students stay close to home so that their parents can watch over them. Young people with diabetes need to experience the freedom and responsibility of doing everything on their own. And they should start practicing that way before they leave for college.

In addition, when they arrive at college, there are always new things students want to experiment with and do, if they haven't already: staying out really late, going on a freshman wilderness trip, drinking alcoholic beverages. The best thing IMHO (in my humble opinion) is if parents and the college community prepare kids to do those things in a safe way. Case in point: If a diabetic female is going out of town with a friend, make sure she takes along her insulin and glucose monitor, as well as let the friend know she has diabetes and they both have some candy with them in case the diabetic student's blood sugar gets very low. Also, roommates and RA's should know what and where a glucagon kit is and when/how to use it.

Finally, I suggest diabetics locate and talk with other diabetic students on campus, including how to do fun things and keep blood sugars in check, especially when it comes to exercise and recreation. A competitive field hockey player who also had diabetes lived in my freshman dorm; I learned a lot from her about how to manage diabetes amidst intense exercise. Last but not least, students really underestimate how important sleep is, both for surviving AND thriving at college, and especially for managing diabetes.

Marjorie: Great! Do you have any other advice for parents?

Marejka: Yep. Every diabetic needs the freedom to fail (meaning that there are going to be times when she or he does something and goes into an extreme high or low BG). A person with diabetes needs to know what to do when that happens, how to get themselves out of the situation, who to call to follow up and figure out how to prevent this from happening again.

At the same time, parents need to be able to set aside their own anxieties of what happens when those failures occur and not blame the student. It's so important NOT to get so wrapped up in their own fears that they can't support their child. Parents might practice saying things such as, 'Wow! That must have been really scary for you.' Or, 'So how do you think you'd want to do that differently next time?'

Also, the family might go through some test runs of different scenarios before the kid leaves home. Come up with situations like, 'You're heading out with your dorm mates to a frat party. You know that everyone will be drinking, and you probably will too. What are some things you need to think about and plan for before you go out the door?' If a student can think through a scenario ahead of time, he or she will be better prepared for when it really happens.

Of course, mom and dad won't be thrilled about a lot of things that take place on college campuses, but they should try to be realistic about what really happens and be willing to help their student plan for those realities.

Marjorie: Thanks for taking the time to chat with me about all of this. I have learned a lot about how you handled -- and continue to handle -- your diabetes. I can't imagine other people won't think the same.

PS: You might be interested to know that Marejka is now a veterinary student at Oregon State University, where she is learning about diabetes and other chronic diseases in animals.