Choosing a College?—Overcome the Hurdles Early

Our daughter Kristin is 17 and was diagnosed with mild hemophilia a year ago. She is just finishing her junior year in high school, so college is a big focus in our family right now. Just like the other aspects of growing up and facing life changes, the process of selecting a college involves decisions that apply to all families as well as special considerations for families of college-bound kids with hemophilia.

One of our first considerations in choosing a college was size. We live in a small community, and Kristin’s high school has only 700 students. So, we decided to concentrate on smaller colleges. We don’t want Kristin to “get lost” or become “a number” in a large college. We are also looking at colleges where living in a dorm is mandatory. This way, Kristin can be assured of adult guidance without her having to ask for it or seek it out.

The size of the college Kristin chooses isn’t related to her hemophilia. But because Kristin has hemophilia, we’ve identified some critical requirements for any college Kristin considers. We can’t wait until Kristin is accepted by a college or gets to campus to make sure it has a health center on site, that a treatment center and NHF chapter are nearby, that our insurance offers coverage in the area, and that she can have a small refrigerator in her dorm room to store factor. It’s important to check out colleges to make sure they meet these criteria and any others you establish before your teen gets his or her heart set on a specific place.

Because Kristin has mild hemophilia, she may not have a bleed for the entire time she is at college. But, she must be able to get to a treatment center if she needs to, and I would like her to see doctors there periodically. I also want her to stay active in the hemophilia community, and she can only do that if a chapter is nearby. What do I consider nearby? I think a 50-mile radius is a good rule-of-thumb. Kristin has already had to eliminate one college she was interested in because there was no treatment center anywhere near it.

Insurance coverage is critical. Some HMOs operate only in certain geographic areas. Fortunately, our insurance coverage is broader. But something I didn’t realize is that Kristin must be a full-time student to continue coverage under our plan—that means she has to take a certain number of course credits each semester.

Once Kristin has decided on a college, my goal is to make sure she is prepared to be a strong advocate for herself and knows how to handle any emergency. Starting this year, Kristin has been making all her own doctor and dentist appointments and going to routine visits by herself. I’ve told you about my “To Go Bag” that has everything needed for an emergency infusion. Well, Kristin now has her own “To Go Bag”—a lime green soft-sided cooler. She has to take it with her if she travels more than an hour away from home. She also carries a letter explaining her condition and the treatment, where her factor is stored, dosing guidelines, and infusion record, and wears a MedicAlert^® bracelet all the time.

It will be a major milestone in our family when Kristin goes off to college. But I will feel better knowing she is in the right place and that she has the skills to live independently and cope with any emergencies that may come her way.

*MedicAlert^® is a registered trademark of the MedicAlert Foundation.