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