How to Talk to Your Child About Sickle Cell Disease

Helping your child understand sickle cell disease can help them cope better and learn to take care of their health. It is important to use words and concepts they can understand. Encourage your child to ask questions and give answers in honest, simple terms.

The following tips can help you talk with your child about sickle cell disease.

Use the right words for your child’s age

Toddler (12 – 36 months)

Toddlers are just starting to learn about their body. They do not know about sickle cell disease yet. You can tell your child that they go to the doctor for checkups. Read picture books to your child about going to the doctor so they know what to expect. Explain what the doctor or nurse will do.

You might say, “The doctor is going to feel your belly. Where is your belly?”

Preschool and early school–age (3 – 7 years old)

Preschool and early school–age children are starting to understand more about their body. You can tell them they need checkups to see how their body is working. You can also tell them these checkups help them stay healthy.

You could say, “You go to the hospital for a checkup to see how your body is working.”

Elementary school–age (7 – 12 years old)

Many school–age children are learning about cells and what different parts of the body do. You can use this to help your child understand sickle cell disease.

You might say, “Red blood cells are a part of your blood. They are usually round so they can move through your body easily. When you have sickle cell disease, some of the round red blood cells change into a banana shape. Those banana-shaped cells can’t move around as easily, so sometimes they get stuck at different places in your body. This might hurt.”

You can also use pictures and diagrams to show your child what you are talking about.

Teens (13 – 18 years old)

Talk openly and honestly with your teen about sickle cell disease. They can also learn the correct medical terms for their illness and treatment. Teens often understand the medical team and want to be included in discussions about their care. As they get older, you can help your teen learn skills to help them manage their own healthcare. The transition to adult health care usually happens at age 18.

Be as clear and honest as possible

Talking with your child about sickle cell disease and what to expect at medical visits can help them adjust and have less worry.

• Make sure your child understands that sickle cell disease is not a punishment. Nothing your child did, or did not do, caused sickle cell disease.
• Avoid telling your child that they go to the doctor because they are sick. Telling a child that they are sick when they feel healthy can be confusing. Young children might start to think they are always sick.
• Get your child ready for needle sticks. You can say, “The doctors will need to take a little blood when we are at the hospital so they can see how your body is working.”
• Remember that your child hears and understands a lot. By age 3, children are speaking in short sentences. Talk to your child about sickle cell disease and let them ask you questions. It is okay if you do not have all of the answers. Talking with you gives them a chance to talk about their fears.

Ask your care team for help

Your care team can help make talking with your child easier. They can help your child understand treatment and adjust to being in the hospital. They can also help you find the right words to say when talking to your child about sickle cell disease.

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