Sickle Cell Disease: Take Charge of Your Health

Living with sickle cell disease has its challenges, but it doesn’t have to hold you back. You can feel good and live a healthy life. Here are some ways you can take charge:

• Build your knowledge. Learn what happens inside your body. Talk to your care team about how to stay well. Be curious. Ask questions.
• Connect with others in the sickle cell community. Join a sickle cell support group. Your care team can point you to one at your hospital or in your local area. You also can find support and information online at:
  • Be the Spark
  • oneSCDvoice
• Learn about your treatment options. If you’ve had a pain crisis, anemia, or acute chest syndrome, you may already know about pain medicine and other treatments to help you deal with problems from sickle cell disease. There are also medicines that can help prevent problems from happening in the first place or make them less severe if they do happen.
• Make decisions together. Talk with your care team and your parent or another adult you trust about your treatment options. Think about your goals and what’s important to you. Ask questions and speak up if you have concerns. Choose the option that’s best for you.

You can take charge of your health and live more comfortably with sickle cell disease.