Connacht Tribune
The struggle of coping with a life-long debilitating desire to fall sleep
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
Significant state investment is required to address ‘shocking’ inequalities that leave cancer patients in the West at greater risk of succumbing to the disease.
A meeting of Regional Health Forum West heard that survival rates for breast, lung and colorectal cancers than the national average, and with the most deprived quintile of the population, the West’s residents faced poorer outcomes from a cancer diagnosis.
For breast cancer patients, the five-year survival rate was 80% in the West versus 85% nationally; for lung cancer patients it was 16.7% in the west against a 19.5% national survival rate; and in the West’s colorectal cancer patients, there was a 62.6% survival rate where the national average was 63.1%.
These startling statistics were provided in answer to a question from Ballinasloe-based Cllr Evelyn Parsons (Ind) who said it was yet another reminder that cancer treatment infrastructure in the West was in dire need of improvement.
“The situation is pretty stark. In the Western Regional Health Forum area, we have the highest incidence of deprivation and the highest health inequalities because of that – we have the highest incidences of cancer nationally because of that,” said Cllr Parsons, who is also a general practitioner.
In details provided by CEO of Saolta Health Care Group, which operates Galway’s hospitals, it was stated that a number of factors were impacting on patient outcomes.
Get the full story in this week’s Connacht Tribune, on sale in shops now, or you can download the digital edition from www.connachttribune.ie. You can also download our Connacht Tribune App from Apple’s App Store or get the Android Version from Google Play.
Galway 3-18
Cork 1-10
NEW setting; new opposition; new challenge. It made no difference to the Galway minor hurlers as they chalked up a remarkable sixth consecutive double digits championship victory at Semple Stadium on Saturday.
The final scoreline in Thurles may have been a little harsh on Cork, but there was no doubting Galway’s overall superiority in setting up only a second-ever All-Ireland showdown against Clare at the same venue on Sunday week.
Having claimed an historic Leinster title the previous weekend, Galway took a while to get going against the Rebels and also endured their first period in a match in which they were heavily outscored, but still the boys in maroon roll on.
Beating a decent Cork outfit by 14 points sums up how formidable Galway are. No team has managed to lay a glove on them so far, and though Clare might ask them questions other challengers haven’t, they are going to have to find significant improvement on their semi-final win over 14-man Kilkenny to pull off a final upset.
Galway just aren’t winning their matches; they are overpowering the teams which have stood in their way. Their level of consistency is admirable for young players starting off on the inter-county journey, while the team’s temperament appears to be bombproof, no matter what is thrown at them.
Having romped through Leinster, Galway should have been a bit rattled by being only level (0-4 each) after 20 minutes and being a little fortunate not to have been behind; or when Cork stormed out of the blocks at the start of the second half by hitting 1-4 to just a solitary point in reply, but there was never any trace of panic in their ranks.
For more, read this week’s Connacht Tribune.
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GARDAÍ and the IFA have issued a joint appeal to all road users to take extra care as the silage season gets under way across the country.
Silage harvesting started in many parts of Galway last week – and over the coming month, the sight of tractors and trailers on rural roads will be getting far more frequent.
Inspector Conor Madden, who is in charge of Galway Roads Policing, told the Farming Tribune that a bit of extra care and common-sense from all road users would go a long way towards preventing serious collisions on roads this summer.
“One thing I would ask farmers and contractors to consider is to try and get more experienced drivers working for them.
“Tractors have got faster and bigger – and they are also towing heavy loads of silage – so care and experience are a great help in terms of accident prevention,” Inspector Madden told the Farming Tribune.
He said that tractor drivers should always be aware of traffic building up behind them and to pull in and let these vehicles pass, where it was safe to do so.
“By the same token, other road users should always exercise extra care; drive that bit slower; and ‘pull in’ that bit more, when meeting tractors and heavy machinery.
“We all want to see everyone enjoying a safe summer on our roads – that extra bit of care, and consideration for other roads users can make a huge difference,” said Conor Madden.
He also advised motorists and tractor drivers to be acutely aware of pedestrians and cyclists on the roads during the summer season when more people would be out walking and cycling on the roads.
The IFA has also joined in on the road safety appeal with Galway IFA Farm Family and Social Affairs Chair Teresa Roche asking all road users to exercise that extra bit of care and caution.
“We are renewing our annual appeal for motorists to be on the look out for tractors, trailers and other agricultural machinery exiting from fields and farmyards,” she said.
For more, read this week’s Connacht Tribune.
Connacht Tribune Digital Edition App
Download the Connacht Tribune Digital Edition App to access to Galway’s best-selling newspaper.
Click HERE to download it for iPhone and iPad from Apple’s App Store, or HERE to get the Android Version from Google Play.
Or purchase the Digital Edition for PC, Mac or Laptop from Pagesuite HERE.
Get the Connacht Tribune Live app
The Connacht Tribune Live app is the home of everything that is happening in Galway City and county. It’s completely FREE and features all the latest news, sport and information on what’s on in your area. Click HERE to download it for iPhone and iPad from Apple’s App Store, or HERE to get the Android Version from Google Play.
Families queue up for school’s offer of free house
West has lower cancer survival rates than rest
Galway minors continue to lay waste to all opponents
Gardaí and IFA issue a joint appeal on summer road safety
Marathon Man plans to call a halt – but not before he hits 160 races
