What Is Sickle Cell Disease?
Sickle cell disease. It's a strange sounding name — and, no, the word "sickle" isn't related to "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.
Sickle cell disease is inherited. You can't catch it from someone. It's most common among people of African or Hispanic descent, but it can occur in many different ethnic groups.
There's no easy cure for sickle cell disease. In rare cases, it is possible to get sick enough to die, but most teens and kids are able to manage sickle cell disease by eating carefully and taking vitamins (especially folic acid), getting enough rest, and scheduling regular visits to the doctor — and by having supportive friends like you who let them just be themselves!
What's My Friend Going Through?
Your friend may be tired more often than you are or have trouble fighting infections. People with sickle cell disease can develop anemia. They also may have some jaundice.
Your friend also might have bouts of severe pain, caused by the red blood cells restricting blood flow. These are called "pain crises" and they can happen anywhere in the body. Pain crises can last anywhere from a few moments to several days or even longer. Right now, there's no cure, but doctors can give a person medications to help lessen the pain.
If you want to know what it's like to have sickle cell disease, ask your friend: Your gentle curiosity may help your friend feel less self-conscious or less embarrassed (after all, we all can feel awkward about the things that make us feel different from our friends). If your friend doesn't feel like talking, though, don't press. Doing a little research online can help you get a sense of what it's like to live with sickle cell disease.
Most teens with sickle cell disease have to pay extra attention to diet, exercise, and watching how their bodies respond to common infections. Some may take antibiotics to help fight off common bacteria. They might need to have frequent doctor's appointments to stay well.
So What's a Friend to Do?
First, be there for your friend. OK, so this is obvious. But sometimes a friend may not realize how important it can be. People with chronic illnesses often feel isolated and alone, especially if their symptoms keep them out of school for stretches of time.
Visit your friend as often as you can. Even if you aren't sure what to say, just being there to listen to music, share some quiet time together, and show your support will mean a lot.
If you can't be there in person, take a moment to text, call, or IM. Set up a social network group so your friend can stay connected to a bunch of people. Or surprise your friend by sending a card or note through the mail.
Talk about it — and listen. Most of us like to talk with people we love and trust when we're going through tough times. Listen, ask questions, and do some basic research on your own so you can understand more about the condition and what your friend might be feeling. Don't be afraid to ask questions of your friend's family, the doctors, and other people with sickle cell disease.
Your friend might have to limit some of activities, especially sports, and may feel self-conscious about having sickle cell disease. Try to be understanding and remind your friend of the skills that make him or her shine — like a great singing voice or debating skills. Having a chronic illness is only a part of who your friend is.
Encourage healthy habits. Eating well and staying hydrated is important for all of us, 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" may think they have to drink or smoke in order to fit in.
Know the warning signs. Talk to your friend if you notice any of these symptoms. They may be signs of a serious problem:
- severe chest pain
- shortness of breath (difficulty breathing)
- abdominal swelling or pain
- 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 a good idea to know the signs so your friend can get medical attention if he or she needs it. 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.
Be the go-to person. Managing a chronic disease takes a lot of energy and 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 point person in charge of bringing books and assignments, and keeping him or her up to date on what classmates and friends are doing.
Take care of yourself. When a close friend has a disease like sickle cell, it can take a toll on you, too. So try to be aware of your own emotional needs. It's particularly hard to watch someone you care about endure a pain crisis — it can feel helpless and scary. Think about how you want to respond and talk to your friend about what's most helpful. Talk with a trusted adult about the impact this has on you, or keep a journal or write poetry or songs to get your feelings out.
It can feel good to be there for your friend, in whatever way feels natural, so that the disease doesn't take center stage. More than anything, just focus on having fun together.
Reviewed by: Robin E. Miller, MD, and Steven K. Reader, PhD
Date reviewed: August 2009
Note: All information is for educational purposes only. For specific medical advice, diagnoses, and treatment, consult your doctor.
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