Monday, 19th February 2018
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State has a duty to narcolepsy sufferers

Dear Editor

Imagine knowing, that you, or your young adult child, could 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 everyday life would be if you were a young person with Narcolepsy in terms of work, study, exams, travel, finding accommodation and socialising.

It is a reality for approximately 100 young Irish people today because they developed Narcolepsy after they received 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 after receiving Pandemrix.

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 with Narcolepsy without each having to be assessed on an individual basis for supports they require.

It wants the State to fulfil the duty of care that the State is morally bound to provide.

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 way 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.

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 ten-year-old girl who was vaccinated at the age of three has just been diagnosed.

If you have symptoms of Narcolepsy and are concerned after reading this article, please make contact with your GP to explore a possible diagnosis. Anyone wanting to contact Sound can email the Sound Committee at: This email address is being protected from spambots. You need JavaScript enabled to view it..

Yours sincerely

Tom Matthews,

Drogheda.

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