I contracted narcolepsy after getting swine flu jab says Kinnegad man
A young man Westmeath man who believes that he contracted two life limiting medical conditions after receiving the swine flu vaccination as a teenager is suing the state.
Dominic Vaz from Kinnegad was repeating his Leaving Certificate in Columba College in Killucan when he got the Pandemrix swine flu vaccination in January 2010.
About three months after receiving the vaccination, which was manufactured by pharma giant GlaxoSmithKline, Dominic started feeling excessively tired during the day and needing naps. He initially put it down to stresses and strains of day to day living.
The symptoms, however, began to get worse. He also started temporarily losing power in parts of his body when he felt a strong emotion such as anger or laughter.
Despite his declining health, Dominic continued to try to live his life as well as he could, and after completing his Leaving, he moved to Galway to study Architectural Technology, a topic he was “passionate about”.
His interest in the subject was not enough though, due to his inability to stay awake in the stuffy lecture halls.
“I struggled to get out of bed and then to stay awake in lectures. I lost interest and failed the year,” Dominic told the Westmeath Examiner.
Numerous medical appointments and tests failed to produce a diagnosis. It was only when he paid a visit to a GP who already had a patient who had contracted narcolepsy after receiving the swine flu jab that he was sent to a specialist in the Mater Private.
More than five years after he started experiencing symptoms, Dominic was diagnosed with Narcolepsy – a neurological disorder that creates a disturbance in the normal sleep-wake cycle and Cataplexy – a sudden loss of muscle tone, often brought on by strong emotions such as laughter or anger (see below) in May 2015.
After living with his symptoms for so long and doing research online, Dominic was unsurprised by the diagnosis.
Three years on, he is learning to live with his conditions. He is also on medication for narcolepsy, which has stabilised the symptoms.
Dominic is currently working in an Irish bar in the Belgian city of Antwerp. Despite having a better understanding of his conditions, he still has to make sure that he takes regular naps during the day if the wants to properly function. Fortunately, he lives above the bar he works in.
“Depending on how bad the day is I have to take one to three naps,” said Dominic. They could be from five to 10 minutes to an hour. It all depends on what I have to do that day.
“If I have to go to work I will plan to have a 15- or 20-minute nap prior to it. If I don’t, it gets hard to cope with the day.”
Understanding
Although working in bar can be tiring and may not seem the ideal job for someone with his conditions, Dominic says that it works well most of the time. One of the major downsides, he says, is that he cannot be as spontaneous as most 25-year-olds.
“If I get an hour off, I would choose sleep over food. Having that little bit of a nap makes life that so much easier. I feel more refreshed and it works with the medication.
“I cope the best way possible but it is a burden on my life and it makes it more difficult to me to say yes or no to things.”
Since his diagnosis, it has also been easier to get people to understand his behaviour, he says.
“Now all my friends and family, my boss at work, everyone knows what it is and how it affects me. Even if we are out and about with my friends or in a car, if I need to nap it doesn’t bother them.
“I may only sleep for 10 minutes but it will make my day a lot better if I have that nap.”
Although he looks after himself, the nature of his conditions means that incidents are unavoidable. However, Dominic refuses to be defined by his conditions.
“I have dropped trays at work through someone saying something to me and I would have reacted.
“I’d pass it off as if its clumsiness because obviously I don’t like to use it as an excuse.”
Dominic is one of almost 100 young people who it is believed contracted narcolepsy after receiving the swine flu jab in 2009/2010. Almost half of the young people who developed narcolepsy from the vaccination also developed cataplexy.
Dominic and his parents are members of Sufferers of Unique Narcolepsy Disorder (SOUND), a charity set up by parents of children who it is believed developed narcolepsy after getting the swine flue vaccination.
SOUND provides support for 87 Irish families affected by the vaccine. It says that it 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”.
Almost a decade later, up to 70 people, including Dominic, who believe that they developed narcolepsy after receiving the swine flue are suing the state.
When the vaccine was purchased in 2009, the government granted GlaxoSmithKline full indemnity from any potential claims. The HSE finally stopped administering the vaccine in March 2010.
SOUND says that “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”.
“...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.”
“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.”
As for Dominic he would love to return to college but his inability to stay awake in meetings or lectures means that it is unlikely that he will be able to do so, which could hamper his future career prospects.
He wants to ensure that he and the other young people who received the vaccine in good faith receive support throughout their lives.
Regardless of the outcome of the court case against the state, he is determined to live his life to the fullest.
“If I could every go back to that day when they came into school to do the vaccinations I would... I try not to let it get in my way because I am only 25 and this is my life and I have to deal with it in any way possible.”