This week is Idiopathic Hypersomnia Awareness Week. As there are many similarities between idiopathic hypersomnia (IH) and narcolepsy, notably the impact that both these sleep disorders have on education, work and relationships, Narcolepsy UK exists to raise awareness and support all those in the UK with a diagnosis of IH too.
Given the causal link between the deployment of the Pandemrix swine flu vaccination in 2009/10 and the sudden onset of narcolepsy in some individuals, Narcolepsy UK sets out its position with regard to the ongoing vaccination campaign against the SARS-CoV-2 virus.
The Medicines and Healthcare products Regulatory Agency have issued a drug safety update regarding the use of Modafinil during pregnancy:
"Modafinil potentially increases the risk of congenital malformations when used in pregnancy. Modafinil should not be used during pregnancy and women of childbearing potential must use effective contraception during treatment and for 2 months after stopping modafinil."
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.
The Nederlandse Vereniging Narcolepsie have shared with us a link to a YouTube video for narcolepsy awareness they have recently uploaded. They have done this for World Narcolepsy Day 2020 (Sept. 22, 2020) as part of their ambition to raise awareness of narcolepsy on a global scale.
Same but Different is a not-for-profit organisation which uses the arts for positive social change by working in partnership with organisations, communities and individuals to highlight inequalities and bring communities closer together.
The Glimmer of Hope photography competition is an opportunity to visually express the hope that exists for people affected by rare disease. The deadline also happens to coincide with World Narcolepsy Day.
Vaccine Injury Compensation for a child with narcolepsy caused by seasonal flu vaccine
We are pleased to be able to report the successful outcome of the first case of its kind, an English appeal tribunal has now found that a child’s narcolepsy was likely caused by the seasonal flu vaccine and consequently found that a vaccine injury compensation payment under the Vaccine Damage Payment Act 1979 is due to the child in question.