Dan Neville (Limerick, Fine Gael)

I thank the Ceann Comhairle for allowing me to raise the issue of the investigation into the increase in narcolepsy in children and adolescents in 2009 and 2010. I commend Dr. Darina O'Flanagan, director of the Health Protection Surveillance Centre, and the expert group on the work they did looking into this problem. The study found an increased risk of developing narcolepsy in those aged between 15 and 19 who received the Pandemrix swine flu vaccine compared to those who had not received it. 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 the vaccine alone would be sufficient to explain what has been seen and observed by the expert group. International experts agree a number of factors are likely to have contributed to the increased risk and a number of ongoing international studies will provide additional information. The report shows the rate of narcolepsy among children in Ireland rose 13-fold since the vaccine was administered. The overall findings tally with those gathered in Finland on the sharp increase in narcolepsy among those who received the Pandemrix vaccine. Like Ireland, Finland had a large scale flu vaccination campaign in 2009 and 2010.

As of 16 December last year 28 cases of narcolepsy with a symptom onset since April 2009 had been identified in children and adolescents in Ireland. Of these, 22 had received the Pandemrix vaccine before the symptoms onset. Based on the primary study period between 1 April 2009 and 31 December 2010 and the first health care contact because of narcolepsy symptoms, the group found a significant 13-fold increase in narcolepsy in children and adolescents vaccinated with Pandemrix compared with unvaccinated children and adolescents. The absolute number of narcolepsy cases attributable to Pandemrix vaccination was five per 100,000 vaccinated children.

Narcolepsy is a nervous system disorder and its exact cause is not known. In some patients narcolepsy is linked to a reduced amount of the protein hypocretin, which is made in the brain, but what causes the brain to produce less of this protein is unclear. There is a possibility that narcolepsy is an auto-immune disorder, which is where the body's immune system mistakenly attacks healthy tissue. Narcolepsy tends to run in families and certain genes are linked to it. Narcolepsy symptoms usually occur between the ages of 15 and 30. The symptoms are periods of extreme drowsiness during the day and a strong urge to sleep often followed by a sharp nap or sleep attack often lasting 15 minutes although they can be longer. They may happen after eating, while driving, while speaking to somebody or other situations. Most often the person awakes feeling refreshed. Dreamlike hallucinations between sleep and wakefulness can occur which involve seeing or hearing things and possibly other symptoms. Sleep paralysis is where a person with narcolepsy cannot move as they begin to fall asleep or wake up. It may last for 15 minutes. The person suffers a sudden loss of muscle tone while awake which makes him or her unable to move. Strong emotions such as laughter or anger can trigger cataplexy whereby one's head will suddenly fall forward, one's jaw will become slack and one's knees will buckle. Most attacks of cataplexy last for 30 seconds but in severe cases a person may fall and stay paralysed for several minutes.

There is no known cure for narcolepsy. The approach is to control the symptoms. Lifestyle changes and emotional counselling can help a person to work and take part in social activities. These involve eating lighter vegetarian meals during the day and other issues to do with sleep. It is a lifelong condition. It is not deadly but may be dangerous if episodes occur while driving, operating machinery or similar activities. The complications include difficulty functioning at work and taking part in social activities, injuries or accidents and suffering side-effects of medicines used to treat the disorder. However, it can be controlled with treatment.

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