In the run-up to World Narcolepsy Day 2020, Narcolepsy UK invited people with narcolepsy and their families to contribute their stories of what it's like to live with narcolepsy or with a person with narcolepsy.
Thank you to all those brave enough to share your experiences. Some of the stories make for hard reading and some are uplifting, but we hope that together they capture the spectrum nature of this disorder.
Today (September 22nd) is the second annual World Narcolepsy Day. This day is dedicated to raising awareness of narcolepsy on a global scale. Established by 24 patient advocacy organisations across 6 continents in 2019, World Narcolepsy Day unites the international narcolepsy community to inspire action, increase public knowledge, and elevate the voices of the 3 million people living with narcolepsy worldwide.
When walking home after a full day at university, I began to notice my knees buckle for a split second and there was nothing I could do. In that moment, it felt as if my whole body was about to give way; then the next thing I knew I was completely fine. I had just started my fourth year studying chemical and process engineering, the workload was high and beginning to get the better of me. At home, I might try to watch a film, but would be overwhelmed by a need to sleep and be unconscious within the first five minutes.
Aimed at tackling the challenges and discrimination faced by the narcolepsy community across the UK, the Narcolepsy Charter will be a written statement of the rights of people with narcolepsy and their carers. It will set out the basic rights that people with narcolepsy and their carers deserve and should expect.
World Sleep Day® is Friday March 13, 2020 and will incorporate the slogan, 'Better Sleep, Better Life, Better Planet.'
Traditionally, Narcolepsy UK have marked mid-March as an important date in our calendar for raising awareness. Historically, this has broadly aligned with the Spring Equinox / European Narcolepsy Day & similar events run in the USA such as Sleep Awareness Week & Suddenly Sleepy Saturday.
We are attending our first World Sleep event and have sent Matt to showcase your #NUKCharter (Narcolepsy UK have a booth in the main exhibition hall 23rd-25th September) and take part in an official event on Sunday, September 22nd, to mark the inaugural #WorldNarcolepsyDay to which he has dedicated a huge amount of personal effort in helping to make happen along with Julie Flygare of Project Sleep and other participating groups from around the world.