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.
*Names have been changed to protect user privacy.
|Sickle Cell Disease Association of America This group provides education, advocacy, and other initiatives to promote awareness of and support for sickle cell disease programs.|
|Sickle Cell Information Center The mission of this site is to provide patient and professional education, news, research updates, and sickle cell resources.|
|Adolescent Health Transition Project This is a health and transition resource for adolescents with special health care needs, chronic illnesses, and physical or developmental disabilities.|
|American College Health Association This organization provides advocacy and education to advance the health of college students and communities.|
|Sickle Cell Anemia More than 70,000 Americans have sickle cell anemia, which occurs when someone inherits two abnormal genes that cause red blood cells to change shape. Find out more.|
|My Friend Has Sickle Cell Disease. How Can I Help? People with sickle cell disease need good friends who understand and can help them get through tough times. This article for teens helps you learn what you can do to be that friend.|
|Blood Transfusions About 5 million people a year get blood transfusions in the United States. This article explains why people need them and who donates the blood used.|
|Transitioning Your Medical Care: Sickle Cell Disease At a certain point, you'll no longer be able to see your childhood doctor. There are a lot of steps to making a smooth switch to adult health care. Here are some tips for people living with sickle cell disease.|
|Sickle Cell Disease: Mike's Story (Video) In this video Mike, 18, talks about living with sickle cell disease, including how he copes with pain episodes and manages his schoolwork.|
|Sickle Cell Disease: Theresa's Story (Video) Theresa, 16, talks about managing her sickle cell when she's feeling well as a way to ward off pain crises and other problems.|
|Managing Your Medical Care Visit our center on managing your medical care for advice on how to get involved in taking charge of your health and choosing the right health care providers.|
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