Sickle cell disease: Schools must do more, researchers say

Researchers at De Montfort University, the University of York and Loughborough University in Britain have released a study suggesting that many students with sickle cell disease aren’t getting the help they need from their schools.

Sickle cell disease is a rare, inherited blood condition — in the U.S., most prevalent in African Americans — that causes sufferers to develop abnormally shaped, “sickled” red blood cells that clog blood vessels and cause complications such as chronic severe pain, organ damage and sometimes stroke.

The research team, led by professor Simon Dyson of De Montfort University in Leicester, surveyed hundreds of students with sickle cell disease, public officials, and schools across England. A majority of students reported that they had at times been prevented from going to the toilet; about half said they had been prevented from drinking water as needed; a third said that had been forced to do “unsuitable exercise.”

“All of these could trigger a severe sickle cell painful crisis,” the researchers wrote.

What’s more, about a third of the kids said they were considered lazy by teachers, when they were simply tired from their illness. On average, students said they missed more than 16 days of school each year.

The researchers advise schools to implement policies that will help students with sickle cell disease get needed treatment and continue with their studies — but subtly.

“Good practice consists of changing the wider school environment in the background without drawing attention to the young person with sickle cell as different from others,” Dyson said, in a statement.

Work to improve schools’ approach to sickle cell disease is going on in the U.S., too, where about 70,000 to 100,000 people have the condition.

Nancy Rene, a former principal of Dorsey High School in Los Angeles, remembers a student at her school in the late ‘90s who struggled with the disease. She followed his progress in school, but too many absences meant the student was unable to graduate on time. “We didn’t know enough soon enough,” she says. “We needed to intervene in the 9th or 10th grade.”

These days, Rene — who also has a grandson with sickle cell disease — is a patient advocate at the Sickle Cell Disease Foundation of California who works with parents, teachers and school administrators to teach them how to help students with the disease succeed.

Often, this means parents getting closely involved with a child’s school and teachers before he or she enters kindergarten, she says, working with them to make sure the student can stay on track with schoolwork. Parents need to learn how to work with bureaucracy, and to figure out what laws exist to protect them and their children as they inevitably have to miss school and work to deal with the disease. And, as the British team recommended, Rene also says that schools need to get educated about sickle cell disease (making sure staff know what, for example, is an emergency situation for a student) and make adjustments to ease the way for students.

Learn about the De Montfort University study or visit the Sickle Cell Disease Foundation of California website.