Last year we blogged about a swine flu vaccine called Pandemrix which was suspected of causing narcolepsy. In yesterday’s article “Parents slam inaction after narcolepsy support pledge” the Irish Examiner highlights that children who developed narcolepsy after receiving the swine flu vaccine have yet to be offered a comprehensive package of supports almost a year after a Government pledge. The Finnish government, in comparison, have set aside €30m to pay for medical care, travel costs for treatment, and other expenses. Last year Courts in Sweden awarded compensation to children who developed this disorder.
Narcolepsy is a brain disease in which sufferers have daytime sleepiness, broken sleep at night and a condition called cataplexy, which is a sudden loss of muscle tone and strength. Additional symptoms include automatic behaviour (patients carry out certain actions without conscious awareness). All of the symptoms of narcolepsy may be present in various combinations and degrees of severity.
Narcolepsy usually begins in teenagers or young adults and affects both sexes equally. The first symptom to appear is excessive daytime sleepiness, which may remain unrecognized for a long time in that it develops gradually over time. The other symptoms can follow excessive daytime sleepiness by months or years.
The lobby group Sound (Sufferers of Unique Narcolepsy Disorder) is seeking financial support for its 47 members, 38 of whom are under 18, if they are unable to work and also clarity about what allowances those affected are entitled to, and want parents whose ability to work is compromised, due to their children’s condition, to have some form of assistance.