Dublin: New Vaccine-Related Narcolepsy Support Group Launched

18 Sep

A support group has been launched for children suffering from a chronic sleep disorder linked to one of the vaccines used to ward off swine flu.

The HSE has identified 30 cases of possible vaccine-related narcolepsy

The HSE has identified 30 cases of possible vaccine-related narcolepsy

A new support group has been launched for children suffering from a chronic sleep disorder linked to one of the vaccines used to ward off swine flu in 2009 and 2010.

Called SOUND – which stands for Sufferers of Unique Narcolepsy Disorder – the group aims to help parents identify if their children have been affected by the condition and provide them with help if they have.

So far 30 cases of narcolepsy have been identified by the HSE, which said it has now put arrangements in place for speedy tests and diagnosis.

A possible link between narcolepsy and the Pandemrix vaccine, which is no longer on offer here and has been recommended for restricted use only by the European Medicines Agency, is currently being investigated.

Scandinavian studies have already indicated a link between the flu vaccine and a rise in narcolepsy in children.

There’s no cure although medicine helps.

The HSE says it will support those affected but hopes the matter will not put people off having vaccinations.

NEWS UPDATE:

AN INSURANCE scheme that compensates victims of pharmaceutical injuries in Finland is being examined by parents of children in Ireland who developed a chronic sleep disorder after being immunised against swine flu.
The Finnish Pharmaceutical Insurance Pool has said it expects the first claims in relation to those who developed narcolepsy after receiving the Pandemrix vaccine to be settled in October-November.

Compensation will be paid for both temporary and permanent effects experienced by people who got the vaccine.

So far, the Pharmaceutical Insurance Pool has received more than 70 compensation claims. Narcolepsy sufferers can lodge claims for another three years.

Hilary Dowdall, one of the founding members of SOUND (Sufferers of Unique Narcolepsy Disorder), said Irish parents would welcome a similar type scheme.

“That sort of set-up would be fantastic. At the moment, our focus is on the children’s current needs, particularly education, and a lot of parents have had to fight individually for their needs to be addressed. But we don’t know what the future holds, for example in turns of the capability of someone with narcolepsy holding down a job.

“So it would be good to know that there would be some kind of provision for their future,” Ms Dowdall said.

She said a number of parents of the approximately 30 people affected by narcolepsy post-Pandemrix were taking legal advice.

Her own daughter Chloe received the vaccine aged 10 and quickly developed narcolepsy with cataplexy.

The latter is a sudden loss of muscle tone ranging from slackness of facial muscles to total collapse. Initially, she feared her daughter may have a brain tumour but after seven months of to-ing and fro-ing with doctors, she was diagnosed by a consultant in Temple St Children’s Hospital, who had been made aware by an overseas colleague of the possible serious side-effect of Pandemrix.

Last Saturday, parents of children ranging in age from six to 18 attended the official launch in Dublin of SOUND, a support and information group for the parents.

Group chairwoman Mary Fitzpatrick, has received confirmation from Health Minister Dr James Reilly that he will meet with them shortly to discuss their concerns.

HSE clinics and GPs administered over 900,000 doses of Pandemrix during the H1N1 pandemic in 2009/2010.

Last Friday, the HSE confirmed it was aware of approximately 30 new cases of potential narcolepsy in children and adolescents.

The HSE said it was making contact with affected families and is seeking advice from Scandinavian countries on how to help.

(editor’s note: A reader has asked how can she contact this support group) contact Crumlin Children’s Hospital or the HSE) see comment: 

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Decrease in number of swine flu cases

Keywords:  hse, vaccine, swine flu

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