Schoolboy overcomes narcolepsy with help from Evelina London

Fifteen-year-old Louis Haxell from Bedford says that the expertise of the Evelina London sleep medicine team has helped him manage his narcolepsy, a rare disorder that causes a person to suddenly fall asleep.

Louis first fell asleep unexpectedly during a class at school when he was nine. His teachers were concerned and raised the issue with his parents as over time it was happening more often. His local doctors could not work out what was causing Louis’ unusual sleep patterns so his mother took him to A&E, and after several tests he was referred to Evelina London Children’s Hospital for specialist assessment.

The sleep medicine team at Evelina London conducted tests including a sleep study and lumbar puncture to help diagnose Louis with narcolepsy and prescribe medication.

Louis said: “I was frustrated that my condition was preventing me from being able to get on with school and rugby games, and before coming to Evelina London it was starting to affect my relationships at home and school. I’m now able to manage my narcolepsy a lot better, and the team at Evelina have also helped my school to understand what my condition is all about.”

Some symptoms of narcolepsy can be triggered by strong emotions including laughter and stress, so Louis and his family were also given guidance on how to avoid incidents by better managing his emotions. As a result Louis can now manage his condition much better, and is working hard and revising ahead of taking his GCSEs next year.

Dr Mike Farquhar, Paediatric Sleep Consultant at Evelina London, said: “Louis is a fantastic young man. It has been a pleasure to work with him and his family over the last few years, and to help him manage the consequences of living with narcolepsy, which can be a very challenging condition to treat.

“When sleep fails, health declines and quality of life decreases. For this reason the Trust is keen to raise awareness of the importance of sleep for young people and their families, and we hope to bring sleep experts and patients together to help prevent and manage sleep disorders.”

Helen Haxell, Louis’ mother, said: “The sleep team at Evelina London have been fantastic for our family, and really helped us to manage Louis’ narcolepsy. As it’s such a rare condition we were often unsure how best to deal with it, but Dr Farquhar and his team took the time to look into Louis’ case and reassure us.

“Our family never felt alone through the process as Evelina London has been there every step of the way. We can’t thank them enough - without their help we would still be struggling to manage such a complex condition.”

The Evelina London sleep medicine team also support staff across Guy’s and St Thomas’ hospitals and community services who work night shifts. Junior doctors at Evelina London and new Foundation programme doctors are taught about the importance of sleep when they join the Trust.

Find out more about sleep medicine services at Evelina London.