Narrating Narcolepsy—Centering a Side Effect

Abstract

The mass-vaccination with Pandemrix was the most important preventive measure in Sweden during the A(H1N1) influenza pandemic of 2009–2010, and covered 60% of the population. From 2010, an increased incidence of the neurological disease narcolepsy was reported, and an association with Pandemrix was affirmed for more than 200 children and young adults. The parental experience of this side effect provided a starting point for a collectively shaped critical narrative to be acted out in public, but also personalized narratives of continual learning about the disease and its consequences. This didactic functionality resulted in active meaning-making practices about how to handle the aftermath—using dark humor, cognitive tricks, and making themselves and their children’s bodies both objects and subjects of knowledge. Using material from interviews with parents, this mixing of knowledge work and political work, and the potential for reflective consciousness, is discussed.

Keywords:

• A(H1N1)
• mass-vaccination
• narcolepsy
• parents’ narratives
• side effects

Notes

1. In November 2013, a European alliance with members from the United Kingdom, Sweden, Ireland, Finland, and Norway was formed. http://www.narcolepsy.org.uk/news/press-release-new-european-alliance-meets-discuss-impact-swine-flu-vaccine-pandemrix-children-1.

2. In Sweden there are no mandatory vaccinations, not even for the child immunization program. Nevertheless, the coverage of vaccination is very high at more than 98% for children’s vaccination.

3. http://www.lakemedelsverket.se./Alla-nyheter/NYHETER-2011/Rapport-fran-fallinventeringsstudie-om-Pandemrix-och-narkolepsi/.

4. http://www.lakemedelsverket.se/english/All-news/NYHETER-2013/Registry-study-confirms-increased-risk-of-narcolepsy-after-vaccination-with-Pandemrix-in-children-and-adolescents-and-shows-an-increased-risk-in-young-adults.

5. The vaccine Pandemrix was used in 38 countries, but other vaccines were also used. See http://www.ecdc.europa.eu/en/healthtopics/pandemic_preparedness/pandemic_2009_evaluations/Pages/pandemic_2009_evaluations.aspx for details. Sweden had an advance purchase agreement with GlaxoSmithKline (18 million doses—two doses for each citizen). When World Health Organization declared phase six of the pandemic, the built-in trigger was pulled to call the agreement.

6. The informants (pseudonyms) and the children (pseudonyms) and ages at the time of vaccination: Cecil, father of Erika 11; Marianne, mother of Martin 12; Peter, father of Filip 7; Greta, mother of Maja 14; Lydia, mother of Nils 6; Frej, father of Glenn 12.

Additional information

Notes on contributors

Britta Lundgren

BRITTA LUNDGREN received a PhD in ethnology from Umeå University in Sweden 1990 and she is now professor at the Department of Culture and Media Studies at the same university. She is heading the research project “Epidemics, Vaccination, and the Power of Narratives.” Her latest book, The Social Politics of Research Collaboration (2013) is edited with Gabriele Griffin and Katarina Hamberg.