Connors charity build for Narcolepsy
Connor wishes to Raise money for Narcolepsy UK. He was been diagnosed with Narcolepsy and Cataplexy and now wants to help with the research. His goal is build a new custom PC made up from donated parts. The machine will be raffled off/sold to raise money.
Show your support on Connors Facebook page and Donate on Connors Virginmoney Giving page
Iona is running the Edinburgh Marathon!
Will you support Iona Murray who is running the edinburgh Marathon in May for Narcolepsy UK.
You can follow Iona on Facebook and donate on her Virgin Money Giving page.
Narcolepsy Conference in Leicester
This year Narcolepsy UK has decided to get out and about to meet its members. We are holding a meeting in May in Scotland and we are now happy to announce that Narcolepsy UK will be holding a Conference in Leicester on 30th June. (read more)
Or just go ahead and book your ticket now!
News
Markku Partinen to speak at Scottish Conference
Narcolepsy UK is pleased to confirm that Dr Markku Partinen will be speaking at the Spring Conference in Edinburgh on Saturday May 12. Joining us from Finland Dr Partinen will be making his first UK comments after the publication last month of his latest findings on the link between Pandemrix, the H1N1 vaccine and Narcolepsy.
Markku Partinen was one of the first researchers to point to the possibility of a link between Pandemrix and Narcolepsy; working with colleagues from the Finish Ministry of Health, Markku Partinen and his team noticed first a significant increase in childhood narcolepsy and then the fact that the majority of those diagnosed had taken Pandemrix. His studies went on to record that narcolepsy appeared between 0 and 242 days after vaccination (which gives an average of 42 days) and that unlike traditional narcolepsy the symptoms started very abruptly and 94% developed cataplexy.
The incidence of children vaccinated developing narcolepsy was 9 cases per 100,000 compared to 0.7 cases per 100,000 in unvaccinated children. This means that in Finland, children vaccinated with Pandemrix were 12.7 more likely to be diagnosed with narcolepsy. In the UK we expect the figure to be slightly lower at about 8 cases per 100,000 which will mean an extra 80 children developing narcolepsy over the coming years. Why the difference? Come along to the Conference and find out.
If you would like to hear the latest developments from Finland including how adults might be affected and those who had narcolepsy before taking Pandemrix have been affected the place to be is The Royal College of Surgeon’s in Edinburgh on Saturday May 12th.
As well as Dr Partinen, Irene McArthur will also be speaking about how narcolepsy affects the entire family; we will also be having updates on the latest issues on benefits and getting xyrem to members. A full day but with time to network and meet other people with the condition we do hope that you can join us on the day.
New light in Pandemrix and Narcolepsy
Markku Partinen and his team in Finland have just published a new study on the link between Narcolepsy and the vaccine given to prevent H1N1, Pandemrix. (read more)
The Employment and Support Allowance
In 2008 Employment and Support Allowance (ESA) replaced Incapacity Benefit and Income Support (on the basis of disability or incapacity for work) for new claimants. Narcolepsy UK has prepared a major document dealing with how people with narcolepsy can claim the benefits that they are entitled to. We hope that it will help demystify the situation and give you some help in understanding what is going on and how to fill out your application form. (read more)
Narcolepsy does not significantly shrink your brain
Investigators have discovered that, in narcoleptics, whatever triggers the loss of hypocretinergeric cells, attacks just those cells and not other areas of the brain. (read more)
Is narcolepsy a risk factor for diabetes?
Obesity is common in narcolepsy and an increased prevalence of Type 2 diabetes has also been reported. However, a recent study has suggested that narcolepsy is not a risk factor per se for diabetes. (read more)
Does H1N1 influenza cause narcolepsy?
There is increasing information which suggests that infections with H1N1 'flu can trigger narcolepsy in some individuals. (read more)
Weekend get-together
The General Purpose sub-committee plans to organise a weekend get-together this summer for families of children with narcolepsy. The intention is to combine sessions on subjects of interest with opportunities to meet and share experiences with other families in a relaxed setting, as well as optional group activities. More details will be announced in the near future, but in the meantime the committee would like to hear from everyone who would be interested in participating: what would you like to see at the event, and is there anything that you can contribute towards making it a success?
Please email your comments and suggestions to info@narcolepsy.org.uk with the subject "Family Event".
Would you like to help in a study?
Not a clinical study for drugs, but something that will help determine if people with narcolepsy plan and majke decisons differently to the rest of us. Sophie is a student at Cambridge who is looking for help with her MSc project. She decided on narcolepsy due to personal experience of how debilitating the condition can be. This explains what she is looking for and we will be happy to pass on any comments.
