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I Have Sickle Cell Disease. What Should I Know About Going Away to College?

I have sickle cell disease. I got accepted to a college in another state and I’m nervous about getting the right medical care because I’ll be far away from my doctors. What should I know about studying away from home?

When it comes to taking care of yourself away from home, a lot depends on how severe your sickle cell symptoms can be and where you are going to college. If you’re going to college where the climate may make symptoms worse (like a high-altitude location or a region with very hot or cold weather), you may need more care for pain or other symptoms. If your college is near a big city, it may be easier to find doctors familiar with treating sickle cell disease than if your college is in a small town.

Regardless of where you go to school, you’ll need to plan your care around both places. Here are some tips:

Keep in touch with your at-home hematology team. Doctors and nurses who have been caring for you over the years are the best people to manage your overall health. Arrange in advance to get regular check-ups during school breaks. Let your at-home care team know whenever you get medical care at school — and send or bring a copy of any lab results or health center records back to your hematologist.

Find a doctor in the college student health department (or near your school). Do this as soon as you arrive at college so you have a plan in place in case an emergency happens. Fill the doctor in on your health situation and give him or her the contact information for your hematologist back home.

Find out if there is a day treatment center for sickle cell disease near where you will be living. Some large cities have specialized sickle cell treatment centers. Staff at this type of health center are trained to help patients with sickle cell pain. Because of their expertise, they may be able to help control any pain crises faster than a regular emergency room can.

Have your hematologist back home make a copy of your records. If you need emergency care away from home, this will let doctors know about your medical history. It can really help to keep your own medical records on hand for situations like these.

Ask for special housing if you need it. If the climate where you’re going gets very hot or very cold, you’ll need to have heating and air conditioning — which, ideally, you can control in your dorm room. You may want to ask for a room that is within walking distance of the main campus so you can get to your lectures, the library, cafeteria, etc., without walking too far. (If that can’t be arranged, the university should get you a room near public transport.) These things are requirements under the Americans With Disabilities Act, so contact the school’s disability services if you’re having trouble getting your needs met.

All students get nervous about moving away to college, whether they have a medical condition or not. The good news is, more and more people with conditions like sickle cell disease are going to college these days. So student health centers and other campus offices have a better grasp of what’s involved in caring for students with health needs, or can point students to places where they can get specialized care.

Reviewed by: Steven Dowshen, MD
Date reviewed: January 2015
Originally reviewed by: Jean Wadman, APN

*Names have been changed to protect user privacy.