IMAGINE knowing that you, or your child, could just suddenly fall asleep at any time. Think of the implications for careers, education or something as simple as travelling on public transport.
That’s the reality of narcolepsy. Think about how difficult every-day life would be if you were a young person with narcolepsy in terms of study, exams, work, using public transport, finding accommodation and socialising.
It’s a reality for approximately 100 young Irish people today because they developed narcolepsy after receiving the 2009/2010 H1N1 Swine Flu vaccine Pandemrix (manufactured by GlaxoSmithKline) at the behest of Irish State.
Sound (Sufferers of Unique Narcolepsy Disorder) was set up by parents of children who developed narcolepsy. The support group and registered charity continues to be run by a small voluntary team of parents of children with narcolepsy and young adult narcolepsy sufferers.
Sound provides support for 87 Irish families affected by the vaccine and wants the State to provide a pathway for the children and young adults with the condition to move through life, without each having to be assessed on an individual basis for supports they require.
Narcolepsy is a neurological disorder that creates a disturbance in the normal sleep-wake cycle. Its symptoms include excessive daytime sleepiness, disturbed night-time sleep, hallucinations and sleep paralysis (inability to move while being wide awake for several minutes).
Essentially, Pandemrix caused the immune system of sufferers to mistake Orexin for the Swine Flu virus. Orexin is the brain regulator of sleep, wakefulness and appetite. This destruction has had a devastating effect on the people affected, their families and friends.
There are two main distinct forms of narcolepsy: type one – narcolepsy without cataplexy, which is classified as a disorder; and type two – narcolepsy with cataplexy, which is classified as a disease.
Cataplexy is a sudden loss of muscle tone, often brought on by strong emotions, such as laughter or anger. Severity can range from weakness in the face (sometimes seen as a loose jaw, or tongue hanging out), knees, arms, legs or neck and slurred speech. Some narcoleptics will have droopy eyelids, mouth open, tongue protrusion and head bobbing through to its most severe form, where a sufferer can collapse. Even in a complete collapse, the sufferer is conscious and aware of what people are saying but is effectively paralysed.
More than half of all people with narcolepsy also suffer from cataplexy. The personal , social, educational and employment potential of the lives of those injured has been completely compromised and this needs to be recognised and fully accepted by the State, so that provision is made to accommodate them by every agency of the State.
On purchasing the vaccine from GlaxoSmithKline in 2009, the HSE gave the company a full and comprehensive indemnity against all claims and liabilities arising from possible adverse effects of the vaccine.
The HSE stopped administering the drug in 2010. GlaxoSmithKline had previously told the Irish Medicines Board of adverse events and concerns were expressed about the drug by overseas medical professionals as early as the summer of 2009, but vaccinations continued.
Regardless of the outcome of pending High Court cases taken by those affected against the State, Sound believes the State rushed to get whatever vaccine they could and was acting with the best intentions. However, from the start, their response to what transpired has been painfully slow and this has been an extremely difficult and protracted process for the families involved.
We believe it is past time for the State to finally step up on this issue: Sound wants the State to fulfil the duty of care it is morally bound to provide to the children, young adults and their families who have been injured by a State-promoted vaccine.
Sound wants the State to provide a pathway for the children and young adults with the condition to move through life with narcolepsy, without each having to be assessed on an individual basis for supports they require.
Currently, each family affected must jump through the same hoops to get what they are morally entitled to.
The Programme for Government 2016 committed the State to put in place a scheme to respond to the needs of those with a disability arising from vaccination. However, it has failed to meet this commitment.
Sound has received limited support from the State. For example, in Denmark, Finland and Sweden, no fault vaccination schemes ensure lifetime support for those injured, with the State accepting that a person’s potential may not, and in some cases, cannot be realised.
New cases are coming to light all the time. A 10-year-old girl who was vaccinated at the age of three has just been diagnosed.
If you have symptoms of narcolepsy, make contact with your GP to explore a possible diagnosis. Anyone wanting to contact Sound can email firstname.lastname@example.org.
By Tom Matthews, a
founding member of Sound