Uganda has the fifth highest sickle cell burden in the world. Sadly, the greatest majority of our population is not aware.
The ministry of Health indicated that 13.5 per cent of our population carries this condition while the prevalence of the condition varies by region and district. Sickle cell disease causes progressive organ damage and episodes of severe pain and acute illness.
These episodes result from the sticky and stiff red blood cells which clog tiny blood vessels. Therefore, it is important for us to keep our children with sickle cell as healthy as possible through the following considerations.
Understanding signs and symptoms is the first crucial step of care. As a parent or caregiver, it is your role to recognize the symptoms and signs of sickle cell complications early and initiate appropriate actions.
Many of the symptoms can mimic those of other common diseases such as abdominal pain. It is also essential to learn to anticipate and understand the differences in appearance and development between children with sickle cell and others without it.
Providing adequate access to water. Ensuring that children drink a lot of water to help prevent pain episodes and other complications. In a school setting, unlimited access to water throughout the day is necessary. It is better to drink small amounts frequently than large amounts at once. Where possible, a bottle of water should be allowed in class.
Allowing frequent bathroom/toilet breaks. Children with sickle cell disease produce considerable amounts of dilute urine. This often results in the need to go to the bathroom more frequently than other children. Thus, children with sickle cell do not need to be restricted from bathroom breaks.
Ensuring accommodations during cold or hot weather. Extreme temperatures can trigger pain crises in individuals with sickle cell disease. Teachers should permit layered clothing in classrooms and ensure that students with sickle cell don’t sit in very cold or hot locations. It is essential to remind these students to wear a sweater when it is cold or rainy or to take off these extra layers when it is hot.
Some individuals with sickle cell might have learning difficulties. This is very common in young children due to blockage of blood vessels in the brain causing brain damage. Teachers are in a unique position to observe young individuals with sickle cell for issues like inability to keep attention, decline in academic achievement and difficulties with organization. Such challenges might be due to small brain injuries caused by strokes. Teachers should not simply assume that poor attention in classrooms is due to lack of motivation for school.
Children with sickle cell might have physical issues affecting their health. Growth rate might be affected in children and adolescents, with weight often being low and bone development delayed.
In young adolescents, sexual maturation might take longer than usual. As a parent, understanding this is key in offering the right support to children with sickle cell disease. Children with sickle cell might also have psychosocial issues such as depression, poor family relationships, low self-esteem and sometimes social isolations. These are caused by the frequent illness, which in turn might affect school grades.
Like other children with medical challenges, children with sickle cell 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 should help children identify special interests and talents that may help them identify career goals.
Children with sickle cell need to take frequent breaks when playing. Taking a break every 15 to 20 minutes during vigorous activities will allow the children break and drink. Exercising without rest (to exhaustion) causes muscles to form lactic acid, which leads to acidosis, which in turn increases sickling. This can trigger sickle cell pain and other problems. Parents should explain this to teachers especially the physical education teachers.
Sickle cell patients should be under the care of a medical team that understands sickle cell disease. We currently have a sickle cell clinic at Mulago hospital in addition to the private clinics at major private hospitals in Kampala. All the usual childhood vaccines should be given plus the pneumococcal vaccine.
Parents should know how to check for a fever as this might signal the possibility of serious infection. It is also important for the children to take their hydroxyurea as advised by the medical team.
The author is a Mandela Washington fellow living with sickle cell and the executive director of Uganda Sickle Cell Rescue Foundation.