Illustration of young man holding a large needle on his shoulders.

Managing Your Bleeding Disorder in College

Off to university? Make sure you’re ready to manage your bleeding disorder on your own.
Author: Matt McMillen
Posted
Updated

You’re excited to go off to college, to feel the incomparable freedom of living away from home. But you’re probably scared, too. Independence carries a weight of responsibility—you’ll be making big decisions about your life and managing your bleeding disorder on your own, maybe for the first time.

Greta Hayden-Pless, who has von Willebrand disease type 1, had lots of concerns before she left for Juniata College in central Pennsylvania, three hours from her family’s Upperville, Virginia, home. So, she and her mother put together a packet with information about her health conditions and a list of the medication she takes to share with the campus health system.

That’s just what Ashley Parmerlee recommends.

“It would be good to have a visit with the college clinic early on in the year and let them know about your bleeding disorder and treatment,” says Parmerlee, a medical social worker at the Indiana Hemophilia & Thrombosis Center in Indianapolis. “Your HTC may also be able to have a conversation with that clinic if they need additional education.”

The healthcare team at your hometown hemophilia treatment center can help you plan for what to do if you have a bleed while at college, Parmerlee says, and they can also connect you with a new HTC if one is close by.

Be Active, but Be Smart

On campus, you’ll have lots of opportunities for activity, be it an organized intramural sport or a casual game of Frisbee. Exercising and unwinding with friends are wise ways to balance out the rigors of schoolwork, but keep this in mind: “You will be in charge of deciding whether these are things you can be a part of in a safe way, choosing based on what’s best for your body,” Parmerlee says.

Bleeds and other injuries can cause pain and swelling and might force you to miss class. When you need guidance, call your HTC for advice.

Also, don’t hesitate to talk to the social worker at your HTC if you’re feeling anxious about, well, anything. That’s normal, Parmerlee says. It comes with being in a new place and meeting new people. Your social worker can offer stress-busting strategies, such as getting enough sleep, working out, and practicing yoga and deep breathing exercises.

Build Your Support Network

As an 18-year-old new college student, Hayden-Pless worried about bleeds and how she’d fit in—“I didn’t want to be treated as the sick kid”—but she found some friends quickly, including a few in her dorm who agreed to help her if she ever had an emergency.

“Making friends and developing a support system was super critical,” says Hayden-Pless, now in her mid-20s.

If you don’t feel comfortable sharing that you have a bleeding disorder with new friends, however, that’s OK. It’s your choice. Remember, you are now in charge of you.

“This may be a chance to learn how you want to navigate living with your bleeding disorder as an adult,” Parmerlee says, “and the many other life experiences you will encounter moving forward.”

Find Financial Support

Before attending school in the fall, be sure to research possible scholarships dedicated to students with medical issues or those whose family members have medical issues. Juniata College established the Statton Family Scholarship for just that reason.

Ensuring students have the appropriate health insurance coverage for their college experience can be difficult. Staying on your parents’ health insurance plan may be your best choice.

Find an HTC Near Your School: The national network of hemophilia treatment centers provides an integrated model of comprehensive care for people with bleeding disorders. Find your closest center at dbdgateway.cdc.gov/htcdirsearch.aspx

Comments