Ellen was a normal, healthy 12-year-old until she and her family had the flu vaccine, as recommended by medical staff so they could visit a cousin in hospital.
Within three weeks, Ellen, a twin, started falling. When she began to lose consciousness in the middle of meals, they knew something was wrong.
Like millions of others, Ellen received Pandemrix, a drug manufactured by GlaxoSmithKline and approved by the European Medicines Agency for treating swine flu.
An EU-wide group representing at least 1,000 victims met EU health commissioner Tonio Borg in Brussels, looking for research for treatments, to raise awareness and promote best practice in managing the condition and to gather data on numbers affected.
There are 70 known cases in Ireland, but Ellen’s father, Tom Matthews, said each time they received publicity, more victims came forward.
Mr Borg said he would discuss with science commissioner Máire Geoghegan-Quinn on options for funding research on narcolepsy. On raising awareness, promoting exchange of best practice, and information-gathering, he said this could be done with funds from the Health Programme, and he agreed to discuss how they might encourage data collection.
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