The Big Move to College

Students with rare diseases are proving they can survive and thrive on campus.

Mother and daughter embracing behind car on college campus

It’s the season of goodbyes for parents who have college-aged children. Sure, they’re basically adults but lots of Moms and Dads wonder if they can really take care of themselves, especially if campus is far from home. And when your college student has a rare or serious disease, the worries multiply.

Annette Gregory knows all about it. She just dropped two kids off at college, including daughter Baylee who returned to the University of Oregon, quite a long way from the family home in southern California. Baylee has common variable immune deficiency (CVID), a rare disease that affects her ability to fight off infections. Without treatment, she’s at risk for serious illnesses. So Baylee’s decision to apply to Oregon brought mixed emotions.

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“My heart was like ‘Are you kidding me? I’m not ready to move to Oregon.’ But I knew I had to allow her to do things because she is a fighter and she can make things happen,” Gregory said. “I had to give her the tools to make sure she was ready to take that journey.”

Baylee and Annette Gregory

Baylee Gregory and her mom, Annette.

One “must” was a family visit to the campus to see what the facilities were like, Gregory said. Another was that she wanted Baylee to disclose to the university that she had CVID. Baylee said OK. A visit with Baylee’s doctor at home was also encouraging.

“She gave Baylee a great big hug and said you can do anything you want to do,” Gregory said. The physician also agreed to remain Baylee’s primary doctor and work with the doctor they found in Oregon to coordinate care.

Next, they met with the university’s accessibility office and health center officials. All signs were positive but that didn’t entirely alleviate Gregory’s fears. Knowing Baylee had a close friend from high school as a roommate was another important safety net. And Gregory spent time talking with Baylee about the self-care she’d need to practice at college: sleep, good nutrition, keeping up with treatment and listening to her body. They put together a several-month supply of medicine and had a plan if she needed help more quickly. They also investigated the local pharmacy and figured out which facilities and labs would accept Baylee’s insurance.

Gregory was even able to arrange housing that gave Baylee privacy for when she needed to infuse her medicine. The apartment was not part of a typical, high-population freshman dorm, where germs spread easily. Baylee had a successful year, though she did get run down at one point and needed an adjustment in medication and a weekend at home. But she was able to keep plugging toward her ultimate goal: to become a doctor herself.

“She has things that she wants to do in life. We shouldn’t hold her back. She wants to be able to give back to people, especially the people that fought for her and believed in her and listened to her and found a solution for her to be a ‘normal’ person,” Gregory said. “Her illness has made her a stronger person.”

And if she ever needs Mom?

“She knows I’m a phone call away,” Gregory said.

Several patient advocacy groups offer resources for students and parents who are making the big transition to college life.

The Immune Deficiency Foundation (IDF) provides a hub for educational resources. IDF covers important topics like emotional wellness and making sure a student gets appropriate accommodations, if needed. Students and parents also can find a checklist of items, such as how to find a healthcare provider near campus.

The National Hemophilia Foundation also offers a curated list of college resources, covering the basics as well as more complicated issues like “disclosure.” When you have a bleeding disorder, who at college needs to know?

Looking for a scholarship next year? The Alpha-1 Foundation provides scholarships to people who have the rare disease, Alpha-1 Antitrypsin Deficiency and their close family members.

And if rare disease is a student’s area of interest, the National Organization of Rare Diseases encourages on-campus clubs to bring awareness to the cause. Learn more about NORD’s Student Club program.