This is the world of narcolepsy
You can’t stay awake but neither can you get a good night’s sleep, it is hard to maintain friendships, and you may have difficulty holding down a job
Nadine Keegan, who has narcolepsy, tries to study but is often overcome by sleep. Photograph: Brenda Fitzsimons
Rebecca Collins, Conor Talbot, Alex Donovan, Ben Blackwell, Samantha Atkinson and Ellen Matthews of Sound, a support and lobbying group whose acronym stands for Sufferers Of Unique Narcolepsy Disorder. Photograph: Cyril Byrne
In the coffee dock reception area by the first floor function rooms at the Red Cow Inn, Conor Talbot is out for the count. Stretched along the full length of a sofa, the tall 16-year-old is fast asleep, oblivious to the clamour around him as other youngsters run about playing and parents chat over cups of tea or coffee.
Conor’s mother, Mary Fitzpatrick from Ballymun in Dublin, is well used to it. Her son has been like this for more than four years now. She used to have high hopes for him (still does in her own loving, motherly way), but she knows now that Conor’s life options, the hopes and dreams that any young lad and his mother naturally have, are reduced very significantly.
Mary had her suspicions something was wrong, suspicions that were heightened one morning at breakfast in 2010.
“My twins [Conor’s siblings] were shouting in at me from the kitchen that Conor was asleep in his Cornflakes,” recalls Mary.
She came in to have a look and, sure enough, there was 12-year-old Conor “literally asleep, his head in the bowl”. Mary continues: “Part of me was thinking, ‘He’s becoming a teenager; is this just hormones?’ I have an older son and so I knew things changed anyway when you hit your teens.”
But Conor’s behaviour, which worsened considerably, necessitating significant and continuing psychiatric intervention, was nothing to do with being on the threshold of his teens – as a host of other parents could have told Mary.
Parents such as Tom Matthews from Slane in Meath, who whips out a photo of his daughter Ellen, fast asleep in the back of his car, to illustrate his point. “I was barely out of the drive,” he says, showing the picture. “Happens all the time; she’s there one minute and then, bang, she’s gone.”
Or Hilary Dowdall from Stamullen, also in Meath, whose memory of unusual behaviour in her daughter Chloe starts with Easter holidays in 2010 when Chloe was aged 10.
“She had come in from playing outside and she sitting was beside me. I turned my head, I’ll never forget it, I turned my head to look at the television and I turned back and she was like that [Hilary nods her head to one side, effecting a sleeping position] and straight away I thought, ‘God, she’s doing too much’.”
But Chloe wasn’t doing too much.
Nor was Alex, from Rathgar in Dublin, Mairead Lawless’ son who in 2009 was just five years old. “His personality completely changed because, when he became tired, when he was trying to stay awake, he became very aggressive, very angry, very argumentative and very irrational.”
Young Rathfarnham adult Samantha Atkinson, aged 21, and Tom’s daughter, 16-year old Ellen, are well able to articulate for themselves, without the help of their parents. I ask Ellen how she would describe her life.
She looks to her Dad. “Does language matter?” she asks him – and me. Tom doesn’t say anything. No, I say; say it in your own words, I don’t mind.
Ellen pipes up. “Pure shit!” she says.
It’s a statement uttered without apparent anger or aggression; more a blunt, matter-of-fact assertion.
“It’s terrible. There’s nothing positive about it.”
This is the world of narcolepsy – a world where you can’t stay awake but neither can you achieve good, restorative sleep; a world where terrifying demons can inhabit your night; a world where it is hard to maintain friendships; a world where, in the future, you won’t be able to drive a car, where your career options will be limited and may have difficulty holding down a job. People with narcolepsy typically have something called cataplexy – brief, sudden weaknesses of the muscles, often during the day, and usually associated with near instant lapses into sleep.
On top of all that, the parents and children I am meeting are convinced that their problems arose because they took part in a mass State-sponsored vaccination programme that for them, went horribly wrong.
Narcolepsy is an autoimmune condition in which people lose control over their sleep patterns and when they do sleep, they do not experience the sort of deep, restful sleep that restores and rejuvenates.
For the parents, young adults and children in Sound, a support and lobbying group whose acronym stands for Sufferers Of Unique Narcolepsy Disorder, the condition appears to have been triggered by Pandemrix, made by GlaxoSmithKline, the UK-based pharma giant. Pandemrix was not used prior to the 2009 swine-flu outbreak, and has not been used since 2010 and the related surge in the instances of narcolepsy, particularly in Finland, Sweden and Ireland, and some other European countries where it was also used for mass vaccination purposes.
Sound knows of between 70 and 80 Irish children and young adults who developed narcolepsy after the State’s mass vaccination programme of 2009/2010. The group meets about every six weeks in the Red Cow pub at the Naas Road M50 junction in Dublin to share information and discuss their campaign for permanent State support and compensation. A test case is pending.
One of Ireland’s leading experts in narcolepsy, Dr Catherine Crowe of the Sleep Disorders Clinic attached to the Mater Private Hospital in Dublin, says there is a link between Pandemrix and the cohort of people with the condition that emerged from the 2009/2010 inoculation, but there may also be other triggers, as yet unknown, associated with the outbreak.
“Pandemrix was a trigger,” she says. “The [anti-swine flu] vaccination has played a role but there are other factors, and we don’t know what they are – they could include prior immune history.”
This, broadly, is also the position of the Department of Health (see panel).
Some one million Irish people were vaccinated in 2009/2010, including about 40 per cent of children under the age of 19. Of those, 80 per cent were given Pandemrix and 20 per cent another drug named Celvapan, made by Baxter International, a US-based pharma and healthcare giant. The narcolepsy side effect did not occur with Celvapan.
Dr Crowe continues: “Cataplexy is very tightly associated with a group of genes, one of which is DQBeta1 0602. About 30 per cent of all people in Ireland have this but nearly 100 per cent of the people here and elsewhere who developed narcolepsy from Pandemrix used in the swine-flu vaccine are positive for DQBeta1 0602. So, if Pandemrix was the only factor, we would have a larger number of people developing narcolepsy.”
The mass vaccination of Irish children took place during the winter of 2009/2010. Dr Crowe saw her first case in April 2010 but it wasn’t until about a year after that that numbers began to climb suddenly – the lapse between the administration of the vaccination, the onset of narcolepsy usually within weeks, and patients presenting to her explained by the time it took parents and medics to figure out what was happening.
“It was early in 2011 when there was an avalanche of patients and that was when the little ones [children] started coming. . . I had never seen the kind of numbers [that were] coming through the clinic. Narcolepsy is a relatively rare disorder and I would only have seen around five to six new patients per year in the years before.”
In April 2009, the world was gripped by something approaching panic. Or that, at least, was what many newspapers and broadcasters were projecting at the time. Swine flu was one of the media stories of the moment and newspapers were filled with headlines suggesting, essentially, that mass death beckoned.
“It’s here,” the Evening Standard shouted at normally unflappable Londoners. As the reported death toll from the virus hit 149 in Mexico, the World Health Organisation raised its global alert and the New York Times gathered a clutch of epidemiologists to debate “Swine Flu: A Cause for Panic?”
Perhaps not surprisingly, by May, Time magazine was reporting that swine-flu panic had indeed hit the city while back in the UK, in July the Daily Mail was reporting that National Health Service help lines could not cope with worried callers seeking reassurance.
There was no let up. In August, the Western Pacific director of the WHO, Shin Young Soo, predicted that the number of new swine-flu cases could double every three or four days. “At a certain point, there will seem to be an explosion in case numbers. It is certain there will be more cases and more deaths,” he told a meeting of health experts in Beijing.
The clamour for vaccinations became a global stampede. And Ireland was little different. In November 2009, an Irish Times headline told readers “Swine flu ‘could kill 80,000’ in Europe”, almost certainly reinforcing a perspective by then well set in readers’ minds. By December, the government’s mass vaccination programme was being rolled out in primary and secondary schools, with the aim of inoculating a staggering 800,000 children.
Small wonder that, by year’s end, the words “swine flu” were the most searched on the newspaper’s website during the previous 12 months.
Swine flu is a form of influenza that has been transmitted between humans and pigs since as far back as the great 1918 flu pandemic that affected some 500 million people worldwide, killing anything between 50 and 100 million, up to 5 per cent of the then world’s population, or more than the estimated number of people – more than 37 million – killed in the first World War.
One strain of that 1918 virus was known as H1N1. It re-emerged occasionally, notably in the 1970s, 1980s and 1990s, in 2007 and again in 2009. It was the 2009 outbreak that galvanised global attention and led to mass inoculation programmes in several countries. But not everyone joined the stampede.
In Germany, for instance, several voices – individual medics and also the Deutschen Berufsverbands der Umweltmediziner (the association of German environmental doctors) – warned of significant health risks associated with Pandemrix.
The association said publicly that Pandemrix could provoke autoimmune diseases, including those found in some American and British Gulf War veterans who had taken squalene as part of a vaccination to combat the effects of anthrax. Squalene, originally a shark liver oil derivative, can work as a “kicker” when added to other compounds, accentuating the effect of the active ingredient in a medicine.
Despite such concerns, mass inoculations went ahead in several countries, notably in Scandinavia.
Dubliner Karen Keegan was happy enough for her daughter Nadine, aged 12 in January 2010, to have her swine-flu jab along with others in her school class “because the government said it was safe”, as she puts in, sitting in the kitchen of her Clongriffin home with Nadine, now 16.
“It was in the upper arm,” Nadine chips in. Minutes later, she was feeling “kind of woozy” and collapsed.
“We were in a big hall and they sat us down on the floor. I sat down and I lay down and I turned around and I smacked my head off the pillar and cut my eyebrow. I’m normally good with needles.”
The following months – years even – were for Nadine a bewildering descent into headaches, terrifying nightmares, complete loss of control over her sleeping patterns, ballooning weight and eventually loss of friends. Loss of control, in effect, over her burgeoning life as a young adult.
“I was falling asleep in school. I would be, like, in school. . . I can show you copies where I had taken down notes from the teacher and I think I’m awake but I’m not. I’m not writing what’s on the board, it’s just scribbles. It’s just a line of jibberish. The writing is perfect and then it just fades into this. . .
“[The teachers] never said anything up until I starting falling, like, head on the table asleep. That’s when they started to get at me. But it wasn’t like a concern, it was like ‘She’s not even trying any more’. So it was hassle.”
Karen: “They kept telling her she was lazy, she wasn’t bothering.”
“My friends just laughed at it,” continues Nadine. “I was known as the sleepiest person in the whole school because I’d just fall asleep everywhere and everybody, like, in the class, it kind of got to a stage where everybody’d just look at me and ‘Aw Nadine’s asleep again’, and they’d just have a good laugh about it. It wasn’t like ‘Aw Nadine’s asleep again; there’s something wrong’.”
Many parents find they are not taken seriously by doctors when they first seek help. Some people with the condition are diagnosed initially with depression, tonsillitis, learning difficulties or Asperger’s syndrome.
According to Mary Fitzpatrick: “Parents have been told they are reflecting onto their children; Münchausen syndrome by proxy [a mental disorder in which illness is feigned for attention], that has been raised. Parents have been referred to psychiatrists. People are not being believed.”
Hilary Dowdall felt for a while like “a neurotic mother” as she tried to get answers from doctors and it was similar for Mairead Lawless. Doctors told her Alex needed more fresh air, more play, more sports.
“I said [to them] numerous times, ‘You don’t understand – he’s asleep!’ He is asleep from two o’clock until five o’clock every day; it was impossible to get him up. And [the doctor] was saying, ‘No, no, no, you have to get him up; more fresh air’. It was my parenting that was being criticised.”
A confirmed diagnosis, when it comes, is usually a relief. Ritalin, a drug more commonly prescribed to people with ADHD, can help narcoleptics with their alertness. This and self-imposed behavioural changes – setting aside designated times for sleeping for short periods in the morning and afternoons – can assist with managing narcolepsy.
But as yet, there is no cure.
Latest figures garnered from narcolepsy support groups in northern Europe suggest there are 1,176 people with the condition worldwide who contracted the condition from swine-flu vaccinations (as opposed to developing the condition naturally, so called “organic” narcoleptics). Around 800 of the 1,176 are in Europe, of which about 400 are in Sweden, 150 in the UK and between 70 and 80 here. Sound estimates the true Irish figure is probably closer to 200, the lower figure explained by under-reporting through a combination of parental and medical practitioner ignorance of the condition.
The May meeting of Sound will be joined by a leading world figure in narcolepsy, Emmanuel Mignot, Craig Reynolds Professor of Sleep Medicine at the Sanford Centre for Sleep Sciences and Medicine of Sanford University in California. Last year, blood samples Mignot took from young Irish people with the condition helped confirm his view that narcolepsy was an auto-immune disease.
In May, he will update parents on the latest research into finding a cure for the condition, a quest that may be helped through further blood samples he hopes to harvest then.
More than 40 Irish parents and children with narcolepsy contracted during the vaccination programme are represented by solicitor Michael Boylan, who heads the medical negligence section of Augustus Cullen Law. A test case against the State was launched late last year.
The response of the State Claims Agency, the arm of the National Treasury Management Agency that responds to clinical negligence claims against the State’s health authorities, convinced parents last December that they were about to lose their children’s medical cards.
The HSE said at the time, however, that “in writing to sufferers of narcolepsy, it was never the intention of the HSE to withdraw any discretionary medical cards or any other health services or supports” – a position reiterated last week in response to a query from The Irish Times .
“The Director General of the HSE wishes to make it absolutely clear that he has given a direction that medical supports and services will not be withdrawn for this category of narcolepsy sufferers,” said a spokesman.
Tom Matthews wants three things.
“First, we want them [the State]to apologise up front. I was at a [narcolepsy] conference in Oslo [in January] that was opened by the Norwegian secretary of state. Our Minister for Health won’t even meet us; I have a letter that says his schedule is too full . . .
“Next, I want the temporary medical cards that have been issued to be made permanent and I want all expenses incurred related to this condition to be met by the State. Finally, I want compensation for my daughter.”
Tom, and other parents in Sound, emphasise that they are not “anti-vaccination” and do not wish to be seen that way. But something went wrong for them and their children. By the time any cases come to court, Samantha, Ellen and Nadine – and their younger pals in Sound – will be all but grown up. Looking at each of them, bright, beautiful young woman with great personalities despite all their woes, it is impossible not to be moved by their situations.
Dr Crowe emphasises the importance of being positive, of not abandoning hope.
“They can do well if they are treated,” she says of narcoleptic patients. “Over the years, I’ve had lots of patients who have graduated, who achieve. Intelligence isn’t affected; attention is, but you can get through school and college and get into many careers.
“There’s a lot of research going on. Things will get better.”
Samantha got her jab only because she was with her cousin when she was getting hers and thought, sure, why not, isn’t everyone getting it? She had ambitions to be a beautician but couldn’t handle the study. Now she works temporary in childcare but can’t earn enough to support herself independently.
Nadine did well in her Junior Cert (nine honours and one pass) but has had to scale back for the Leaving (for which she is studying at a new school). Still, she hopes to get to the National College of Art and Design and eventually to teach art.
Diagnosed and on medication, life is “definitely better than it was when I was by myself in my room,” she says.
“But it’s not a full life. I’m constantly tired. I’m afraid of the dark. I’ve developed numerous different fears from hallucinations. So I wouldn’t class myself as having a proper life.”
Ellen has an especially difficult time because of the contrast with her twin sister. They were vaccinated together but only Ellen developed narcolepsy.
“I lost being positive about two year ago,” she says. “You kind of sit around and you watch everyone else doing things and you think, ‘Oh well, I COULD have done that but I CAN’T’. I have a twin sister on the Irish triathlon team and I couldn’t even try for it; there isn’t a chance of me getting it.
“We would have been really equal before this. You kind of watch her, and you’re, like, ‘Wow, I could have done this’, but here I am, just standing here. Watching her doing things, it’s so hard to be happy for her.
“You have to anyways because she’s doing good things. When she’s talking about it, it’s like, ‘Yeah, great, that’s great for you’ [but] you get kind of sick trying to be, like, nice about it. Inside, you are, ‘Oh, this is horrible’.”
The Sound meeting with Prof Mignot takes place on May 17th at the Red Cow Inn. Information and Sound may be contacted via email at soundcommittee2011 @gmail.com. Parents who think a child may have narcolepsy can also contact Temple Street Children’s University Hospital in Dublin (01-8784200). Michael Boylan of Augustus Cullen Law solicitors may be reached via firstname.lastname@example.org or 0404-67412. The Sleep Disorders Clinic at the Mater Private can be contacted at 01-8600090
Pandemrix: The view from the Department of Health
A government report into the anti-swine-flu vaccine Pandemrix and childhood narcolepsy concluded there was a greater risk of developing the condition among young people but that other unspecified factors were also likely to have played a role.
In April 2012, it published the results of a study by an expert group led by Dr Darina O’Flanagan, director of the Health Protection Surveillance Centre.
A statement from the Department of Health said: “The study found an increased risk of developing narcolepsy in the five-19 years age group who had received the Pandemrix vaccine compared with those who had not received that vaccine.
“These results are very similar to those seen in Sweden and Finland with a clear increased risk evident from the available data. However, it is very unlikely that the vaccine alone would be sufficient to explain what has been observed. International experts agree that a number of factors are likely to have contributed to the increased risk and a number of international studies are continuing which should provide additional information.
“The Department of Health, in conjunction with the Health Services Executive (HSE) and the Department of Education and Skills are working together to put in place necessary supports for those people affected by this condition. These will include health and educational supports.”