Narcolepsy Quality Of Life

By | May 31, 2017

Narcolepsy Wake Up Narcolepsy Boston

Wake Up Narcolepsy Boston is anopportunity to raise narcolepsy awareness and funding for research for narcolepsy. And Boston is where it all started .This is where the organization began with a family who was touched by narcolepsyleft here as well as Kevin Cosgrove the co founder. currently we've who donated a majorityof our funds to Stanford and

Harvard University. We are also launching into a campaign of awareness in schools and now we're really lookingforward to that next step when somebody as my son day at the age of 7 wasfalling asleep consistently in school. The teacher was the firstto bring out for attention if the teachers are aware of it to knowthat yes there could be a sleep disorder then that just makes their life much morepleasant it makes their experience in high schoolmuch better

and they need to be aware but because itis a very serious disorder that needs attention. many people suffer for years beforegetting a diagnosis we think that that could be shortened if more people wereaware of what narcolepsy is the symptoms and there's a lot of myths about narcolepsy that could be dispelled be if you talk about it It took five years before I was diagnosedwith narcolepsy and sometimes people aren't diagnosed fortwenty years

While I play on the LPGA Tour I haveprogram called Swinging for Sleep. and I have people donate money forevery birdie I make. and so the money profits wake Up Narcolepsy. I have never been as optimistic has now about the research and thefuture for narcolepsy patients. We have found the cause of narcolepsy. we arenow really understand what's happening in the brain to produce sleepiness and all the symptoms of narcolepsy

and there's a direct path to treatmentand diagnostic procedures say so it's just a matter of hard work alittle bit of funding.

Emmanuel Mignot talks about advances in narcolepsy research and care

MT: My name is Michael Twery. I'm the director of the National Center on Sleep Disorders Research at the National Heart, Lung, and Blood Institute and I'm here today with Emmanuel Mignot of Stanford University, one of our leading researchers working on narcolepsy research and causes of sleepiness and the genetics of narcolepsy and its treatment. Mignot, why don't you tell us a little bit about your research. EM: So when I started to work on narcolepsy, it was not recognized. So people were misdiagnosed, people didn't even know what it was.

So they were seeing s and the s weren't able to say what you have. At the time I remember diagnosing patients, it's not so difficult, they give you the symptoms and I tell them that's what you have. And then some of them would literally cry because for the first time, you know, they had been told they were crazy and for the first time you could tell them, quot;This is your problem.quot; And they know that you know. It's like suddenly you describe the symptoms the way they have them so they know that you have found their problem. That's extremely important. The second thing is

we discovered it has a biochemical cause. It's not in their mind. It's like a little chemical that's missing in their brain that helps to stay asleep and fund your dream. When this chemical is not present, you have narcolepsy. Now we have a test where we can do a biochemical test and say yes, the chemical is missing, you have narcolepsy. And then— MT: It's kind of a fairy tale come true. You've discovered the proteins, the genes, there's drugs that act on these pathways, righté So it's all coming to fruition. EM: So even more exciting I think 10 years after this particular discovery of the link between

this chemical called hypocretin or orexin, and the lack of it and the cause of narcolepsy, we now have drugs that are under review at the FDA for first actually insomnia. Because people who have sleep problems it's more common actually to have insomnia. The first thing the pharmaceutical company did is actually to block the hypocretin system to make people sleep and dream better. And I think now people are starting to think of doing the opposite, which is what I really want. Is a drug that would stimulate and replace your orexinhypocretin so it would replace what's missing in patients with narcolepsy.

And that should really be the best treatment for them. It should be like insulin for people with type 1 diabetes who don't have, you know. It will happen. It's probably going to take 10 more years. Which to be honest as a scientist, it's long but it's not that long. MT: You didn't mention the discovering or advancing our understanding of how narcolepsy comes about. You mentioned that it's not just a part of someone's personality but there's actually a biological cause. Is this something that afflicts peopleé Are they born with ité EM: No, they develop it.

People are born completely normal, they just have a genetic predisposition that many other people have. Maybe I would say 20 percent of the population has that genetic predisposition. And then what we are learning now is when you get certain infections, it triggers the immune system start to fight the infection but makes a mistake and attacks the brain cells that produce hypocretin, confusing them with some kind of bugs that you have been exposed to. That's called an autoimmune disease. Then the cells that produce hypocretin are killed by mistake by the immune system

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