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?
– Selena*

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 go 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 home and school. 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 checkups 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 to your hematologist.

Have your hematologist back home make a copy of your records. This way you can share your health records with your new doctors and you have a copy ready in case of an emergency.

Find a doctor in the college student health department (or near your school). Do this before you arrive at college so you have a plan ready in case an emergency happens. Give the doctor a copy of your health records 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. They may be able to help control any pain crises faster than a regular emergency room can.

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 are better at helping students with health needs.

*Names have been changed to protect user privacy.