Imagine knowing, that you could suddenly and involuntarily fall asleep at any time; think of the implications for careers, education or something as simple as travelling on public transport.
Because that’s the daily reality of Narcolepsy – a condition that affects around 100 young Irish people; and all because they were vaccinated against Swine Flu as children.
BY OLIVIA HANNA
They received the 2009/2010 H1N1 Swine Flu vaccine Pandemrix – but the inoculating thousands of school children to prevent one sickness left a small number with a more serious illness that will last the rest of their lives.
The most common manifestation of Narcolepsy is an acute and ever-present tiredness – but, as NUIG student and narcoleptic Megan Fitzgerald reveals, the consequences run far deeper than that.
Megan, a 21 year old, final year law student, was thirteen when she started noticing that ‘something didn’t seem right’. She was vaccinated in December 2009, and three months later began experiencing cataplexy.
Cataplexy is a loss of muscle control that often appears in tandem with narcolepsy, and for Megan manifested as loss of muscle tone and an inability to control her bladder.
That February she saw her first specialist at the Mater Hospital who agreed that something was not right. He sent her for tests, but after getting the results said that she had ‘giggle syndrome’, and laughed too much.
“I was highly insulted by that,” Megan remembers, “How can you tell a thirteen-year-old to stop laughing? That’s not a firm diagnosis.”
Megan, who hails from Tipperary, then began to notice tiredness symptoms while preparing for her third year exams.
She quit hockey, and began to count the ‘hours, minutes, and seconds’ until school was over so she could go to sleep. Though this was unusual for such a studious girl, she herself chalked it up to the shear stress of exam time.
After a year of multiple false diagnoses ranging from asthma to Munchausen by proxy, she was administered a Multiple Sleep Latency Test, and was finally diagnosed with narcolepsy on February 14 2014.
Though she finally had a diagnosis, it was a struggle to figure out a new normal. After being taken out of school for three months following her diagnoses, Megan only returned to school two days a week. She was given ten hours a week of home tuition and had plenty of time in and out of school for naps.
Now in college, Megan still struggles, but has come to accept her condition and the lifestyle adjustments she needs to make.
She has a doctor she meets with in Galway who is in close contact with her GP, she makes sure to have a healthy diet, naps three times a day, and has found a community of other narcolepsy suffers.
Sufferers of Unique Narcolepsy Disorders, or SOUND, is a group of families whose lives have been changed by narcolepsy as a result of the Pandemrix vaccine.
Aside from providing each other with support, they are advocating for a greater understanding, and acceptance, of the condition.
They explain that Pandemrix was rapidly developed by GlaxoSmithKline to combat the swine flu virus. It went through a limited testing phase, and was different from other vaccines in that it contained part of the inactivated H1N1 virus, as well as a strong immunologic adjuvant (AS03) to boost the immune system response.
But shortly after its distribution throughout Europe, Narcoleptic symptoms linked the vaccine arose, and the vaccine was withdrawn. That however doesn’t solve the problem for those now left with lifelong chronic illnesses.
SOUND is lobbying Government and the HSE to provide what it defines as ‘consistent and appropriate lifelong support’ to those affected with Narcolepsy as a result of Pandemrix.
“We want to effectively raise knowledge within the medical profession in Ireland such that diagnosis is quick and accessible, to raise awareness throughout the general population of Ireland such that all those affected can be helped, ensure that those affected are not disadvantaged/discriminated against as they start their careers,” proclaims their webpage.
Megan sits on a SOUND sub-committee that aims to establish a Centre of Excellence for Narcolepsy at St. James’ Hospital in Dublin so that the needs of those with the condition can be dealt with under one roof.
Megan’s biggest goal is to graduate college and become a solicitor, but she is aware of the obstacles she will have to face. Her lecturers at NUIG accommodate her condition, but she knows that a judge might not be as understanding.
Fortunately, Megan has had time to understand and control her symptoms so that she can hopefully achieve the career she has worked hard for. But she knows there are still people who were not diagnosed as soon as she was and still are unaware of their condition.
Anyone who was vaccinated against the swine flu with Pandemrix and has noticed any of the symptoms of narcolepsy including loss of muscle control, chronic fatigue and decreased immune resistance, are encouraged by SOUND to consider seeing their doctor and getting tested for narcolepsy.
■ If you have symptoms of Narcolepsy and are concerned after reading this article, you can contact your GP to explore a possible diagnosis. Anyone wanting to contact Sound can email email@example.com
Shannon back in full flight!
There was a festive atmosphere at Shannon Airport this week as the inaugural Ryanair Corfu service prepared to take flight – ahead of another new service to Gran Canaria, which begins this week.
The new route to the popular Greek Island will operate twice weekly on Tuesdays and Fridays until the end of October, and the new weekly Ryanair service to Gran Canaria (Las Palmas) begins this Saturday.
All of this means that Shannon Airport is now serving Alicante, Barcelona, Stansted, Gatwick, Kaunas, Krakow, Wroclaw, Warsaw, Manchester, Corfu, Faro, Lanzarote, Malaga, Palma, Tenerife, Gran Canaria (Las Palmas) and Turin.
Passengers on the first Corfu-bound flight enjoyed a pre-departure reception in the airport’s transit lounge which was decorated in festive style.
To celebrate the new routes, the airport gave one lucky passenger a special surprise, return flight tickets for two people to a choice of one of Shannon Airport’s 17 exciting destinations.
A special water cannon salute by the airport’s fire service added an extra sense of occasion as airport staff welcomed passengers and looked after them throughout their time in the airport.
Welcoming the new air services Mary Considine, CEO, Shannon Group, which owns and manages Shannon Airport said: “The global pandemic has had a huge impact on all our lives and being able to once again welcome our passengers as they take to the skies bound for sun drenched holiday destinations is really wonderful.
See full story in this week’s Connacht Tribune, on sale in shops now – or you can download the digital edition from www.connachttribune.ie
Pixies slot proves time is now for the Clockworks
Groove Tube with Cian O’Connell
When Pixies were announced as Galway International Arts Festival headliners way back in 2019, a promising Loughrea four-piece were fresh from relocating to London and bullishly embracing their role as the new faces of former Oasis manager Alan McGee’s Creation 23 record label.
Two years on, the US alt-rock pioneers are yet to grace the Big Top – but the Clockworks, made up of James McGregor, Tom Freeman, Seán Connolly and Damian Greaney, are set to make a US debut in their company with a series of support slots that cement their place as one of Galway’s biggest artistic exports.
In less than six weeks’ time, Pixies will embark on a September tour of the states with the Clockworks by their side for six gigs. The Galway group play their own maiden headline US show in New York’s Mercury Loung on September 8.
On their horizon too, is an end-of-year Irish tour with Dublin indie-rock outfit Inhaler as well as a host of festival appearances, barring cancellations.
With news of the Pixies tour coming in the same week NewDad were announced as support for Fontaines D.C.’s highly anticipated Belfast show on August 13, it is powerful evidence of the ground Galway acts continue to break.
“It’s very exciting to have loads of gigs lined up after absolutely nothing for so long,” James admits.
“It’s really nice to feel like we’re going to hit the ground running and when Pixies came through, that was just amazing and what a way to start. It’s our first time gigging in America – my first time going there personally.
“All four of us are massive fans of Pixies too. Any time they’d come to Ireland, we’d always try and throw our hat in the ring for a support slot and just to think that now we’ll be going around the States with them is insane.”
Read the full interview in this week’s Groove Tube, in the Connacht Tribune – on sale in shops now, or you can download the digital version from www.connachttribune.ie
All out in force to cheer home one of their own
Sitting on an airplane, mid-air from Japan en route to Dublin, Olympic bronze medallist from Moycullen, Fiona Murtagh was unsure whether anyone would be at the airport to meet her and teammates Aifric Keogh of Na Forbacha, Eimear Lambe and Emily Hegarty when they touched down.
Because of Covid-19 restrictions, there was no big welcoming party planned for Dublin Airport. But Fiona need not have worried; as she strode out of airport security and into Arrivals, all her family were there to hug her.
Fiona hadn’t seen her parents Marguerite and Noel since April because of a pre-Olympic training camp in Italy; and her siblings Pádraig, Lorraine and twin Alan all turned up, too.
“Oh my God, I couldn’t believe it. It was actually really emotional, it was so lovely. I didn’t expect the full family to be there. Tears came to my eyes. I hadn’t seen mom and my dad in seven weeks,” said Fiona.
That was just the first leg of what was to be a heart-warming homecoming for a hero.
The family drove back to Galway with Fiona, who had heard “through the grapevine that there was going to be something in Bushypark”.
“But the scale of it, I didn’t expect it at all, it was incredible, it was so lovely to see everyone come out and support and see me”, she said.
Read the full story over eleven pages of coverage on the homecoming of our Olympic heroes in this week’s Connacht Tribune, on sale now – or you can download the digital edition from www.connachttribune.ie