Narcolepsy diagnosed in 41 children vaccinated for H1N1 last year
Surge seen only in Sweden and Finland
Forty one children and young people in Finland who were vaccinated for the H1N1, or swine flu virus last winter have been diagnosed with narcolepsy. In addition, there have been a few cases of the disease in which there was no record of a swine flu vaccination.
Sweden and Finland are the only two countries to report a surge in narcolepsy the same vaccine was used in Canada, where there were only a few cases of the disease.
Narcolepsy has been on the increase in Finland in the past ten years, but not among such young patients. The symptoms of the young victims have been more severe than usual.
“Kataplexy, the sudden loss of muscle tone in connection with a strong emotional state, has not been this common before”, says child neurologist Outi Saarenpää-Heikkilä of the Tampere University Hospital.
“The symptoms are complicated and they are more severe than before. We have to learn how to treat it, because the medicines have not been intended for children, and they should not be used too easily. Older patients suffer most from personality changes - irritability and fits of rage. Going to school becomes impossible for some, and social life becomes more narrow.”
Although the increase in cases of narcolepsy coincides with the vaccines, there is still some question as to whether or not it was actually the cause.
The question was analysed on Monday when families affected by the disease and public health officials met at the Ministry of Social Affairs and Health. The families had little doubt about the connection, and blasted last winter’s vaccinations as a complete failure, which only benefited the manufacturers.
In their appeals to both the Ministry of Social Affairs and health, and to Minister of the Interior Anne Holmlund (Nat. Coalition Party) the parents called for an independent investigation which would not involve those experts who took part in deciding on the vaccination programme.
Several studies have already started. One of them involves ten European Union countries, and there are two others concentrating on Finland. One of the studies is looking into the prevalence of narcolepsy, and the other concentrates on immunology. Previous studies indicate that heredity and immune defence have an impact on the likelihood of getting the disease.
There are other possible factors as well. “Vaccines were given at the same time that children were exposed to the swine flu virus. The cause may be the virus and the vaccine together”, pondered Professor Timo Vesikari, the head of the Vaccine Research Center of the University of Tampere.
One possible cause of the increase in narcolepsy could be the H1N1 virus itself. “Last year’s conference of sleep researchers was concerned about the arrival of swine flu. It was similar to the Spanish flu virus, and the Spanish flu caused people to fall asleep suddenly”, says necrologist Markku Partinen of the Skogby Sleep Clinic.
“We were pleased that vaccines were introduced in reaction to the swine flu. This could help avert an increase in narcolepsy.”
“Getting the disease requires a hereditary susceptibility - a certain type of tissue”, Partinen said, adding that all of those who were diagnosed in Finland had it.
“The tissue type increases the danger of getting the disease as much as 140-fold. There can also be a lack of genes that protect against the illness, and such genes have so far been missing from the ones who have been classified by type. Coming down with the disease can be a factor of many simultaneous factors.”
It is possible that a clear causal relationship is never established.
This would be bad news for those who have come down with the disease, as it would make it more difficult to get compensation.
The vaccine was insured for possible damage that it might cause. However, for any payout, the connection with the suspected disease should be firmly established. Compensations are applied for on a case-by-case basis.
Families of affected by narcolepsy could also get special compensation from the Social Insurance Institution KELA.
Previously in HS International Edition:
Children suffering from narcolepsy exhibit severe symptoms (8.11.2010)
Swedish study: Narcolepsy surge may not have been caused by swine flu vaccine (9.9.2010)
H1N1 vaccinations suspended over narcolepsy scare (25.8.2010)