Living with sickle cell disease

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Children with sickle cell disease (SCD) can participate in physical activity as long as they have more frequent rest periods and increased hydration. Academically, most children with SCD will perform as well as their peers.

Key points

  • Sickle cell disease (SCD) is an inherited blood disorder.
  • The two main characteristics of SCD are long-term anemia and recurrent episodes of vaso-occlusion.
  • Children with SCD with tire faster than their peers when doing physical activity and will need more frequent rest periods and increased hydration.
  • Most children with SCD will perform academically as well as their peers.

What is sickle cell disease (SCD)?

Sickle cell disease (SCD) is an inherited blood disorder. It is not contagious. SCD is more common in people with an African or Caribbean background, but children of Middle Eastern, Mediterranean and South Asian ancestry are also affected.

Sickle cell shape A red blood cell with normal hemoglobin molecules and a sickled red blood cell with abnormal hemoglobin molecules
Red blood cells carry a protein called hemoglobin, which brings oxygen to all the parts of the body. People with sickle cell disease carry sickle-shaped hemoglobin cells that tend to get stuck in the smaller blood vessels.

Sports and extra-curricular activities for children with sickle cell disease

Children with SCD should be encouraged to participate fully to the best of their ability and according to their tolerance level. As a result of low hemoglobin levels (anemia), your child will tire faster than their peers when doing physical activity. Encourage your child to try out for school teams and participate in gym, but with more frequent rest periods and increased hydration.

It is a good idea for you to talk to your child's physical education teacher about the physical discomforts associated with SCD and any symptoms they have had in the past with physical activity. Try to reach an understanding with the physical education teacher regarding expectations for your child. Children with SCD require exercise like all children and should be encouraged to participate to their tolerance level. Do not restrict your child from all physical activity.

Special precautions for swimming

Your child can participate in swimming classes. However, they should limit the time in the pool to 30 minutes. After getting out of the water, they must dry off and change into dry clothing right away. They should not run around in cold, wet swimsuits as their body temperature will fall, potentially resulting in bone pain.

Special precautions for hot weather

When exposed to very hot temperatures, such as during a sporting event in the summer, your child can participate but with frequent rest breaks and increased hydration.

Special precautions for winter activities

Your child should be allowed to participate in winter activities, but they should be dressed well in layers appropriate for the temperature of the day. Areas of increased loss of body heat, such as fingers, toes, head and ears should all be well covered. At temperatures less than minus 5°C, your child should be excused from participating.

Academic performance for children with SCD

Most children with SCD will perform as well as their peers, so expectations for your child should be similar to those of their peers. Having a chronic illness at times results in reduced self-esteem and a lack of confidence. Encouraging them is essential.

There are several reasons why some children with SCD may have exceptionalities.

Missed school days

Your child may miss school because of:

  • scheduled clinic appointments
  • hospitalizations to treat infection or severe bone pain associated with SCD
  • painful bone episodes that are less severe and can be treated at home

This means your child may have less instructional time. It has been proven that school attendance is directly related to academic performance. As a parent, you could speak with your child's teacher about setting up a homework buddy program for your child. A "buddy" would be assigned to your child to collect handouts and notify them of important future deadlines. Also, many teachers have websites where they post homework assignments and future dates for both parents and students. Ask your child's teacher to provide make-up work when your child has missed time at school. Maintain open communication with your child's teachers.

Neurological problems

One in five children with SCD have so-called "silent strokes." These are small strokes in the frontal area of the brain which go undetected unless an MRI is performed. The frontal area of the brain is responsible for executive functioning and this affects your child's ability to focus, organize, plan and memorize. As a child who has had a stroke moves to the higher grades they may experience increasing difficulty.

One in 10 children with SCD under the age of 20 years old will have overt strokes. These result in diminished academic performance and various degrees of physical disability. Most overt strokes can be prevented with a chronic transfusion program when children with SCD are identified early in life.

If your child is finding schoolwork challenging

If your child is having challenges academically, neuropsychological testing should be undertaken and appropriate IEP (individual education plan) intervention done on an individual basis. This would require your written consent.

Children with SCD are expected to have a life expectancy well into the sixth and seventh decade, so they should be prepared for the workforce in a manner that is suitable for the adult with SCD.

Last updated: June 12th 2023