Queen of Sleep

Living with narcolepsy: a personal journey

The Science of Sleep: Hope for Narcolepsy Sufferers

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The Guardian (09/10/2010) reported  that recent medical advances have given narcolepsy sufferers hope of a normal life, but only for a few in the UK. It is great when narcolepsy gets exposure in the media so this is a most welcome article about the difficulties narcoleptics face in obtaining Xyrem/Sodium Oxybate.
The Science of Sleep: Hope for Narcolepsy Sufferers article goes through recent medical advances, and there has been quite a few. There was the swine flu vaccine alleged connection in August which has already been challenged by Narcolepsy UK (Narcolepsy and the Pandemrix Swine Flu Vaccine). In February, Swiss researchers claimed to have identified the overproduction of an anti-body, Trib2, in the immune system of narcoleptics.
Scientists at Geneva and Lausanne universities believe Trib2 is responsible for destroying hypocretin-secreting neurons in the brain. Hypocretin is the hormone that regulates sleep. Other research, mentions that environmental factors could “switch on” the gene (HLA Marker) which exists in a third of the population. In June, a Journal of Sleep  Research paper reported a five-fold increase of the condition among genetically predisposed individuals who had suffered bacterial throat infections in childhood while US studies suggested that exposure to heavy metals and gardening chemicals, as well as passive smoking, could be a trigger.
I am really happy to read and see that there has been a lot of progress in trying to find the cause of narcolepsy and obviously once the cause has been established then the search for a cure/prevention can start. We are still many years away from that and there are many people out there, aware or unaware of their condition, whose lives are touched by the condition every day. Narcolepsy UK are in the process of setting up support groups all over the country and if you are interested in running a support group. They would be very grateful if you could contact them so they can offer their support. I believe that isolation is one of the culprits in managing the condition. Having spent so many years unintentionally refusing to deal with my situation (in my 20’s), my greatest support today are other people with narcolepsy and friends who understand.
The Guardian article continues by mentioning the successful results xyrem-sodium oxybate has shown in treating narcolepsy. As you probably know, it is a derivative of the illicit substance/rave drug GHB. Licensed in the UK since 2006. Xyrem works by mimicking the activity of hypocretin. It then goes on giving the reader examples of the success stories where a patient has been prescribed Xyrem. They seem to outdo the potential side effects and disrupted treatments. Last year at the NUK Conference, I met a man with narcolepsy, who said: Xyrem, it will change your life! Can Xyrem really be the miracle drug/ the raison d’etre everyone claims it to be? And how on earth do you get hold of Xyrem when it is only available to one in 100 UK sufferers. “It’s the drug of choice, finally allowing narcoleptics to live a normal life, yet the link to GHB means it is tightly controlled, and remains under patent,” says John Cherry, director of Narcolepsy UK. And it’s not cheap – a year’s supply sets the NHS back £14,000. Care trusts operate different policies and patients generally battle to  obtain it.
How possible is it to obtain Xyrem when the government is exercising financial pressure on the councils and the primary care trusts? John Cherry, Director of Narcolepsy UK remains  hopeful that publicising individuals’ experiences, coupled with the new findings, will lead to change, yet emphasises that the disorder remains underfunded because “it can ruin your life, but it can’t kill you” (how depressingly true!). He also envisions a future where narcolepsy is a manageable condition treated correctly and efficiently.

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Written by Queen of Sleep

November 17, 2010 at 8:33 pm

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