Harmony Biosciences recently interviewed three families about their experiences with Prader-Willi syndrome (PWS), excessive daytime sleepiness, and school.
For some children living with PWS and excessive daytime sleepiness (EDS), settling into the school year can be a challenge. In fact, the families interviewed for this story share that the constant fight to stay awake during class can negatively influence behavior, academic performance, social interactions, and self-esteem.
“School for Justice was very difficult just because we had to schedule naps into her school day,” says her mom, Kristi. “As she got older, she would fall asleep during class, so she missed out on a lot of schoolwork. She went half days for quite a long time just because it was just too much for her, so she missed out on a lot of learning.”
PWS, Excessive Daytime Sleepiness, and Behavior
Though it can be a major symptom of PWS, excessive daytime sleepiness is not always prioritized as something that can or should be addressed, according to these families. They believe this may be partly because excessive daytime sleepiness can be overshadowed by other PWS symptoms, including hyperphagia, intellectual disabilities, and behavioral issues.
“I was very surprised by the significant sleep issues associated with PWS,” says Erin who has a kindergartener, Victoria, with PWS. “Everyone talks about hyperphagia and anxiety and even some of the behavioral issues, but for us, sleepiness has been by far the most impactful symptom.”
Erin worries that the severe nature of her daughter’s excessive daytime sleepiness will interfere with her developmental milestones and school experience. “If she’s sleeping all day, she's not interacting with her world, with the environment, so how could she possibly learn from it?”
Excessive Daytime Sleepiness at School
For some families, navigating PWS and excessive daytime sleepiness at school can be a challenge, requiring meetings with school administrators and medical staff, incorporation of an Individualized Education Program (IEP) or 504 plan, and ongoing support at home. Parents may find themselves negotiating for scheduled naps during the school day, shortened school days, and even modified course requirements.
For Jennifer’s son, Rocco, excessive daytime sleepiness at school became less manageable as he got older.
“When Rocco was in elementary school, we would work napping or break time into his IEP,” says Jennifer. “It was just a simple discussion with the school. As we moved into the middle school years and beyond, the school’s acceptance of a napping accommodation was much lower.”
Jennifer believes school officials didn’t understand that excessive daytime sleepiness is a symptom of PWS. They suggested she should push her son harder or adjust his sleep schedule.
“Unfortunately, neither of those approaches work, they wouldn’t support Rocco or his disability in any way, and so behaviors would start to unfold,” she says. “Rocco truly has a disability that's reflected in the daytime sleepiness.”
Aside from impacting cognition, quality of life, and overall health, excessive daytime sleepiness can affect behaviors such as rigidity, anxiety, and emotional outbursts.1
Excessive Daytime Sleepiness Outside of School
Beyond academics, EDS can also have a profound impact on students’ abilities to participate in afterschool activities and social events, which can make them feel isolated and alone.
Reflecting on her school years, Justice, age 20, says excessive daytime sleepiness was the biggest factor in her life.
“I couldn't stay awake more than I care to admit,” says Justice. “I missed out on a whole bunch of school. And it was hard because I saw my friends going to football games or going to sleepovers. I had to choose to not go so I could go to school the next morning.”
For some people with PWS, EDS is so severe that it impacts attending school.
“Rocco is not able to access his education physically, he's homeschooled at this point,” says Jennifer. “Even though he can wake up quite early and get moving, by 9, 10 o'clock in the morning he needs another nap or needs to lay down. And if he doesn't, there's a behavior issue.”
“We keep Rocco very close to home, so he can rest when he needs to,” says Jennifer. “Our hope is that with time there will be medications that can put us on a different path.”
“I see our population. I see how amazing they are and how amazing they can be. But we need to find the right medications to help with the hardest parts of PWS so that our kids can be independent, so that they can live their lives to the fullest potential,” says Kristi, Justice’s mom.
Watch a video from these families about their experiences with PWS and school.
Learn more about a clinical trial studying an investigational medicine for excessive daytime sleepiness in people ages 6 years or older with PWS.
Sources:
1Duis, J. et al (2022). Diagnosis and management of sleep disorders in Prader-Willi syndrome. Journal of Clinical Sleep Medicine, 18(6), 1687 – 1696. https://doi.org/10.5664/jcsm.9938
