8 Tips to Support Students With Sickle Cell Disease

In the United States, sickle cell disease is most commonly found among African Americans or persons of African descent; however, people of all races and ethnicities can have SCD. About 1 in every 365 African-American babies in the U.S. is born with SCD; and worldwide, approximately 300,000 babies are born with SCD each year. As more people move from areas highly affected by SCD to the U.S., schools will become more diverse and there is a higher chance that teachers will encounter a student with SCD in their classrooms. As with any student with a chronic health condition, students with SCD may experience health problems during the school day.
To support these students, teachers, nurses and administrators can:

1. Ensure adequate access to water/hydration. Staying well hydrated by drinking plenty of water can help prevent pain episodes and other health problems. Thus, unlimited access to water throughout the school day is essential. Frequent, small amounts of water are better than trying to drink a large amount of fluid at one time. Allowing access to a bottle of water in class is an option.
2. Allow frequent bathroom breaks. Children with sickle cell disease produce large amounts of dilute urine even when they are dehydrated. Thus, children with SCD may need to go to the bathroom more often than other children. Do not restrict students with SCD from bathroom breaks. Provide a special bathroom pass to limit disruptions in instruction and to minimize attention drawn to the student exiting the classroom.
3. Allow accommodations during extreme temperatures and conditions. Cold or hot weather can trigger pain crises. Teachers should not assign a student with SCD a seat in drafty locations, directly in front of fans or under air conditioner vents. Permit layered clothing in the classroom. Remind students with SCD to wear a jacket outside during cold or rainy weather or to take off a layer of clothing when it is hot. Children with SCD should not exercise in extreme conditions (e.g., avoid cold and high heat and humidity).
4. Allow accommodations during physical education and recess activities. Most children with SCD can engage in moderate exercise, including running, swimming, jumping, and riding bikes. However, teachers may modify curricula so that a child experiencing health problems related to SCD can participate in physical education in roles that are less strenuous, such as being the physical education teacher’s “assistant,” “scorekeeper,” or “umpire.” Admitting fatigue, which may be due to anemia, may be embarrassing or draw unwanted attention to a child with SCD. Even with moderate activity, regular breaks or a brief period of rest after physical activity may be necessary. In addition, incorporate frequent water breaks into any physical activity plans. Teachers and administrators may want to consult with the child’s parent or ask the child the level of activity they can tolerate during recess. Also, remember, never require children with SCD to exercise in cold weather without extra layers of clothing to keep warm.
5. Take special care of injuries. Never apply a cold pack to an injury or pain site if a child with SCD is injured during the school day. However, other first aid measures are safe for children with SCD who are injured at school. First aid measures that should be provided when necessary, include applying direct pressure for bleeding, wrapping with an ace bandage, or elevating a hurt limb.
6. Watch for signs of stroke. Some children living with SCD may have learning difficulties due to health problems associated with stroke (blockage of blood vessels in the brain that then causes brain damage). Strokes may be difficult to detect when they affect a small portion of the brain, but they are extremely important to watch for because they are relatively common in the early school years among children with sickle cell disease. Teachers should be aware that declines in academic achievement, inability to maintain attention, difficulties with organization, and mild delays in vocabulary development may be due to small brain injuries caused by strokes. Moreover, teachers are in a unique position to notice changes in school performance that might indicate a stroke and should not simply assume that poor attention in the classroom is due to a lack of the child’s motivation or desire to do well in school. Teachers should contact parents when changes in learning or a child’s attentiveness are detected so that the child’s doctor can be notified. Formal neurocognitive and educational testing may be necessary to determine any learning difficulties caused by stroke. The testing may help school personnel in developing the best teaching strategies for the student. Many students with SCD may qualify for a 504 plan or individualized education plan.
7. Be aware of emotional well-being. Not all children with SCD have outward signs of illness. However, children with SCD may be smaller in size, have delayed puberty or experience jaundice (yellowing of the skin and eyes). These sometimes subtle, outward signs may make children living with SCD targets for teasing and bullying. Students with SCD may cope with their differences by being aggressive, isolating themselves, or avoiding social situations with peers. Like other children with medical challenges, children with SCD may not have as many opportunities to play with other children, thus recreational activities or group-based classroom assignments may serve as opportunities for developing good interpersonal skills and boosting a student’s self-esteem. Teachers can also help children identify special interests and talents that may help them identify career goals.
8. Maintain open communication with parents. Teachers can help create a positive relationship between home and school as well as a sense of continuity for students by maintaining open communication with a child’s family through notes, email, phone contact, or conferences to discuss the student’s performance and well-being in the classroom and at home. Regular contact with a student’s parents is especially important for children with a chronic illness, like SCD. Some children with SCD will have periods when they are unable to attend school, but may not be hospitalized. Whether a student is hospitalized or homebound due to health problems related to SCD, teachers must allow students the opportunity to complete all the required work. Thus, it may be especially important for teachers to talk to parents about missed school plans prior to a period of illness (tutoring, assignment plan, a second set of books to keep at home, or online resources for classwork). When devising make-up work for any child with a chronic medical condition, teachers may want to consider the quality of the assignment over the quantity. Finally, teachers and school nurses should keep up-to-date contact numbers for the student’s parents and doctor in case of emergency.

For more information on raising awareness and advocating for sickle cell patients in your community, watch the video below from Black Health Matter’s 2021 Summer Kappa Health Summit.