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Connacht Tribune

The struggle of coping with a life-long debilitating desire to fall sleep

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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.

Megan Fitzgerald
Megan Fitzgerald: was thirteen when she started noticing that ‘something didn’t seem right’.

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 soundcommittee2011@gmail.com

Connacht Tribune

Hospitality group raises €90k

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Lorraine Gallagher (left) and Charlene Hurley of Galway Hospice presented with a cheque for €27,537 by Brian Lynch and Eveanna Ryan of Connacht Hospitality.

The Connacht Hospitality Group this week announced that they raised more than €90,000 for a range of good Irish causes throughout 2022.

The group, which owns well-known Galway establishments including The Connacht Hotel, An Púcán, HYDE Hotel, Residence Hotel and 1520 Bar, as well as the Galway Bay Golf Resort, held a range of events at various stages of 2022 to fundraise for Claddagh Watch Patrol, the National Breast Cancer Research Institute (NBCRI), Galway Hospice and Make-A-Wish Ireland.

The announcement of over €90,000 worth of funds raised by the Connacht Hospitality Group for national and local charities comes off the back of the past 12 months which saw the group aim to make Corporate Social Responsibility a core part of their identity. This focus allowed them to become more aware of the causes that need assistance while also raising the profile of many of the charities.

The group arranged a diverse array of events to raise funds, and had lots of imaginative ways of grabbing the public’s attention. One event saw people attend HYDE Bar to savour a menu made by a mystery celebrity. In the end, it was revealed that TV personality Gráinne Seoige was the Executive Chef on a night that generated over €8,000 for the NBCRI.

Another event saw staff take part in a ‘Sunrise Swim’ in Salthill – and the public donated in their droves. All money raised went towards Claddagh Watch Patrol, an organisation that works to make Galway’s waterways safer by preventing accidental death and suicide.

One of the most successful fundraisers was the Galway Bay Golf Resort’s Golf Classic, which raised over €22,000 for Galway Hospice.

For more, read this week’s Connacht Tribune.

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Residents in fear of gangs travelling to rural Galway to burgle homes

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Detective Superintendent Shane Cummins.

Residents in rural County Galway are living in fear of being burgled after one small area suffered at least 10 raids in the month of January.

Councillor Mary Hoade told a meeting of the County Joint Policing Committee (JPC) this week that those figures were for around Headford alone, as she called for additional resources to target travelling crime gangs visiting the county.

“Some of these burglaries are taking place in the morning when people go to work; some are in the evening; and others at night. It’s very frightening.  We recognise that these criminals are coming into the county, but we need more support to fight crime,” said Cllr Hoade.

“Rural garda stations have less resources . . . we’re relying on the resources in the nearest town,” she continued.

The Fianna Fáil councillor said gardaí couldn’t be everywhere at once, but communities needed to act as their eyes and ears and report suspicious activity when they see it. Detective Superintendent Shane Cummins (pictured) told the JPC that Galway was being targeted from time to time by travelling gangs.

“Three different gangs visited the county on one day recently,” said Det Supt Cummins.

Cllr Shelly Herterich Quinn (FF) said she believed increased CCTV and automatic number plate recognition cameras – to capture known gangs on tour – should be rolled out.
This is a shortened preview version of this story. To read the rest of the article, see this week’s Connacht Tribune. You can support our journalism by buying a digital edition HERE.

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Connacht Tribune

IDA Ireland’s €10m land purchase backs Oranmore for industry base

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Former Mayor of County Galway, Liam Carroll.

IDA Ireland has trebled its footprint on the outskirts of Oranmore by purchasing more than 100 acres of land to support industry.

It’s understood the semi-state body purchased some 42.9 hectares on the outskirts of Oranmore, for a price in excess of €10 million.

The strategic purchase of land adjacent to some 21 hectares zoned ‘business and technology’ and already owned by the IDA, was a “major vote of confidence” in Oranmore and Galway, according Cathaoirleach of the Athenry/Oranmore Municipal District, County Councillor Liam Carroll (FG).

It brings the total amount of land owned by the IDA in the area to over 150 acres.

This latest parcel, purchased at the end of 2022, is located off the N67 Claregalway Road, to the north and east of the Galway to Dublin Rail line.

“It would be ideally suited and attractive to a major multinational company or companies for the establishment of a high tech, pharmaceutical or medical device type facility,” Cllr Carroll said.

The entire site of 150-plus acres is close to the M6 motorway, and an hour away from international links, Shannon Airport and Ireland West Airport in Knock.  It is also close to a number of potential Park & Ride sites, identified by the National Transport Authority as being suitable for commuters.

It’s understood the land is zoned agricultural and would require a material alteration to the County Development Plan to be voted on by county councillors, in order for it to be rezoned before 2028.

(Photo: Cllr Liam Carroll, who believes the land could be developed for a tech or pharmaceutical hub).
This is a shortened preview version of this story. To read the rest of the article, see this week’s Connacht Tribune. You can support our journalism by buying a digital edition HERE.

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