Sickle cell disease. It's a strange sounding name — but the word "sickle" doesn't come from "sick." The disease got this name because it causes blood cells to be curved or C-shaped, like the shape of an old-fashioned farm tool called a sickle.
Normally, blood cells are round and look a bit like donuts. In people with sickle cell disease, some of the red blood cells harden and curve. They also break down faster than healthy red blood cells and can clog a person's small blood vessels. This causes severe pain, called a "pain crisis."
A pain crisis can last for a few moments, a few days, or even longer. Medications can help lessen the pain.
People with sickle cell disease can develop anemia. They also may have some jaundice.
Sickle cell disease is inherited. People are born with it. It‘s not contagious, so you can't catch it from someone. Sickle cell disease is a lifelong health condition. Right now, there's no cure, but there are things doctors can do to help.
What's My Friend Going Through?
Because of sickle cell disease, your friend may be tired more often than you are or have trouble fighting infections.
Most teens with sickle cell disease have to pay extra attention to diet, take vitamins (especially folic acid), exercise, get enough rest, and stay hydrated by drinking enough water. They need to watch how their bodies respond to infections like a cold. Some people take antibiotics to help fight off bacteria.
People with sickle cell disease may have to limit some activities, especially certain sports. They need to avoid extreme temperatures, like severe cold, which can bring on a pain crisis.
A friend with sickle cell disease might need to go to the doctor a lot. Going through a pain crisis can mean missing lots of school days in a row. Sometimes a crisis can be handled at home, with rest, fluid, medicine, and other things to manage pain. Other times it's necessary to go to the hospital. Some people may have frequent pain crises; others may have them less often.
Being there for a friend is always a good thing. But it's even more important when someone is dealing with an illness like sickle cell. Missing a lot of school can mean falling behind on schoolwork and having to skip social activities, which can make a person feel isolated and alone.
If your friend is missing school because of a pain crisis, he or she will probably be glad when you visit. Hang out, listen to music, talk about what’s going on at school, or do homework together. If you can't be there in person, find another way to talk.
Encourage healthy habits. Everyone should eat well and stay hydrated, but it's especially important for someone with sickle cell disease. Help your friend avoid alcohol and smoking, both of which can aggravate the condition. It's a huge help to a friend (not to mention your own health) when you don't drink or smoke, since people who feel like they're "different" might think they have to drink or smoke in order to fit in. Join your friend in making healthy choices for lunch and snacks.
Know the warning signs. If you notice certain things happening to your friend, get in touch with an adult (such as a school nurse, coach, or your friend's parent) right away. Your friend could need medical help if he or she has:
severe chest pain
shortness of breath (difficulty breathing)
abdominal swelling or pain
an unusual headache
any sudden weakness or loss of feeling, slurring of speech
sudden changes in vision
Sickle cell disease carries a (small) risk of stroke, so it's good to know which signs can require medical help. But don't panic, and don't let watching for danger signs get in the way of having fun together. Most problems won't be serious.
Managing a chronic disease takes a lot of energy. Your friend may tire more easily than you do. If your friend has to miss school or starts to fall behind, nominate yourself to be the person in charge of bringing books and assignments and keeping him or her up to date on what classmates and friends are doing.
There's a lot more to your friend than having sickle cell disease, so don't let the disease take center stage. Treat your friend as you would any good friend, and focus on having fun together.