THE number of young people who have developed an incurable sleeping disorder after getting the swine flu vaccine has now risen to at least 54.
However, despite promises by the Department of Health to provide a full package of supports for victims, some families are still facing delays getting a proper diagnosis.
A letter setting out the frustration and concerns of families was handed in to the department by the support group SOUND which was founded to help victims who developed the disorder narcolepsy after getting the Pandemrix vaccine.
Chloe Roche (12) of Stamullen, Co Meath, who handed in the letter, is now on medication for the condition which causes sufferers to fall asleep suddenly without warning during the day.
Chloe said she finds the side effect of cataplexy the worst to deal with because it means that when she laughs she suffers instant muscle weakness.
Her mother, Hilary Dowdall, said: "We do have supports but our concern is the permanency around them. The medical cards they gave us are temporary.
"We were promised a package and it was due to be put to the Dail before the summer recess last year, but it has been put back and put back.
"We have been trying to meet the minister James Reilly for the last six to seven months. We had met him previously.
"It is important to get a proper timeframe. These children are growing up so fast. Some have left school now and parents are worried about them."
Newly diagnosed young people are still coming to the notice of the group while other families have directly contacted the Health Service Executive (HSE).
The report into the link between the condition and the jab found that "there was a significant 13-fold higher risk of narcolepsy in vaccinated compared to unvaccinated individuals".
The letter from the group set out a series of demands including an awareness campaigns aimed at the public and health professionals, including GPs.
It said following diagnosis, sufferers should be given automatic and immediate access to a special services medical card to cover the cost of all doctor visits, medication and treatment.
There should be continuing educational support at primary and secondary school level and a special education grant for third-level education.
It called for rapid access to the Carers Allowance or Domiciliary Care Allowance for parents who have had to reduce hours or give up work to look after their children.
And they also want a compensation scheme.
The Department of Health said it is considering all possible support which may need to be put in place for those affected by narcolepsy following the pandemic vaccination. The matter is a priority and a further meeting with representatives from the support group will be arranged when the matter has been concluded, it said.