SOUND News and blog
Clare Daly TD demands action on Narcolepsy from Taoiseach Enda Kenny
Clare Daly TD challenges Taoiseach after HSE and State Claims Agency seek to block Pandemrix Narcolepsy documents release. 4th April 2017 Full text of session below: Clare Daly TD: I want to talk to you today about a young man with narcolepsy, a life long debilitating disorder where he can and has fallen asleep without warning, smashing his teeth, breaking bones. He experiences terrifying hallucinations in a state of sleep paralysis. He has to be given expensive anaesthetics to even get a few hours sleep. He's developed joint and muscle pain, suffers from anxiety and depression to the extent that he has tried to kill himself. He is fourteen years of age. The condition limits every aspect of his daily life. There is no cure. And bad and all [...]
Delay In Funding For Vital Sleep Service Criticised
SOUND member Lauren Kavanagh and her father Larry spoke on RTE news last night about the impact of narcolepsy on their lives. Lauren is one of 80 people who developed narcolepsy as a result of the H1N1 Swine Flu vaccine Pandemrix. In the report by Fergal Bowers, they highlighted the need for funding for a sleep clinic in St. James' Hospital that would help young adults to cope with the lifelong neurological condition. You can watch the report here: http://www.rte.ie/news/player/2017/0228/21138353-delay-in-setting-up-narcolepsy-centre-criticised/ Read more about the funding issues here: https://www.rte.ie/news/2017/0228/856154-narcolepsy/ SOUND has repeatedly called on the government to provide direction and assistance to those people affected In recent months SOUNDS has lobbied TDs and Senators to ask a series of questions in the Dáil about fudning for the clinic in St. [...]
Swine flu vaccine victims peg hopes to Commission recognition
After receiving the Pandemrix vaccine to prevent swine flu, nearly 1,700 people developed narcolepsy. Originally published in Politico By Carmen Paun 12/5/16, 9:22 PM CET ¦ Updated 12/5/16, 9:24 PM CET Almost 1,700 Europeans who have a rare sleep disorder linked to being vaccinated against swine flu looked to the European Commission on Monday for recognition of their struggle. The representatives of those affected by a neurological disorder as a consequence of being vaccinated with Pandemrix during the 2009-10 swine flu outbreak in Europe want the European Commission to give them official recognition in the near future. They hope a public statement by the Commission acknowledging the scientific evidence that shows Pandemrix is likely to have been responsible for causing narcolepsy would unlock claims for compensation and fuel research. [...]
Leitrim TD Calls On Minister To Support Pandemrix Narcolepsy Sufferers
In the news this week the Leitrim Observer carried a short interview with Leitrim TD Martin Kenny who is calling on the Minister For Health to provide support for people who have developed narcolepsy as a result of the Pandemrix Swine Flu vaccine. He said: "I am calling on the minister to engage with representatives of SOUND (Suffers Of Unique Narcolepsy Disorder) and to assist them in their quest." The full article can be read here.
SOUND Calls For Government Action On Narcolepsy Caused By Swine Flu Vaccine
There will be a hearing in the High Court next month in respect of a case for damages against the State and GlaxoSmithKline taken by a person who developed Narcolepsy and Cataplexy following the H1N1 swine flu vaccine, Pandemrix. The Government promoted vaccine programme to deal with the Swine Flu epidemic commenced in 2009. In 2010 a number of individuals, both nationally and internationally, reported ill effects shortly after receiving the vaccine Pandemrix which was manufactured by GlaxoSmithKline. In 2011 the European Medicine Agency issued a report confirming the increased incidence in Narcolepsy and Cataplexy among those who had received Pandemrix. A report of the Irish Department of Health in April 2012 found a 13 fold increase in incidence of those who received the Pandemrix vaccine compared to [...]
New peer reviewed research “provide a link between Pandemrix and narcolepsy”
A new peer reviewed research article has been published in PLOS ONE titled “Antigenic Differences between AS03 Adjuvanted Influenza A (H1N1) Pandemic Vaccines: Implications for Pandemrix-Associated Narcolepsy Risk“. (click the link to read the full article) The article compares two GlaxoSmithKline manufactured H1N1 swine flu vaccines, both of which used the AS03 adjuvant. Arepanrix, produced by GSK in Canada and Pandemrix produced by GSK in Europe. The article concludes: “This work identified 1) higher amounts of structurally altered viral NP* in Pandemrix than in Arepanrix, 2) detergent-induced antigenic changes of viral NP, that are recognized by antibodies from children with narcolepsy, and 3) increased antibody response to NP in association of DQB1*06:02 risk allele of narcolepsy. These findings provide a link between Pandemrix and narcolepsy. Although detailed mechanisms [...]
