Here's a short summary of Dr. Mignot's take on narcolepsy:
Top 10 take aways from my time with Dr. Mignot:
10) French accents are adorable
9) There is some connection between strep throat and narcolepsy. The connection is hazy, but definitely present. The fact I got strep A LOT as a kid is clearly not a coincidence.
8) Cataplexy (the sudden loss of muscle tone in response of humor and joy) gets better over time! Winning!
7) Cataplexy, after a certain point, can be controlled to an extent once the patient gets a strong understanding of what brings it on.
6) Xyrem, the date rape drugs turned cataplexy cure, is a must have. I avoided it for the last six months because it's scary to take a date rape drug by choice, but after seeing Dr. Mignot's slides I'm optimistic about how it might be able to help me. Essentially, you sleep so deeply when taking Xyrem that it reduces your "sleep debt" and you simply feel less tired the next day.
5) Hypocretin, the molecule that narcoleptics lack, looks an awful lot like H1N1/swine flu. There is a lot of evidence that certain H1N1 vaccines actually cause narcolepsy because they attack hypocretin as well as H1N1 (DON'T PANIC! The vaccines that did this were only approved in Europe, so Americans are OK).
4) Narcolepsy and cataplexy are way more severe in children than adults. I was lucky.
3) The gene for narcolepsy, HLA-DQB1*0602, expresses itself on white blood cells. Then, when there are foreign agents (viruses, diseases, etc) in the blood stream, the white blood cells bind with them and trigger T-cells to fight infection or disease or whatever. This particular gene, however, when it binds with the white blood cells begins fighting hypocretin producing cells. Since hypocretin is what keeps us awake, the destruction of those cells = narcolepsy. Make sense?
2) There are only about 1,500 diagnosed cases of narcolepsy in China. There are probably closer to 400,000 people there with the disease. Awareness is still a major battle worldwide.
1) We are really close to a cure. Once pharma can develop an agonist (a drug that can cross the blood brain barrier) that works with the synthetic forms of hypocretin that are already out there, narcoleptics will be able to supplement their lost hypocretin and return to a much more normal level of function.
This guy is AMAZING and I was honored to give him what felt like most of my blood. In his adorable French accent he apologized for being such a vampire, hence the title of this particular post.
For more info on Dr. Mignot's research, go to Stanford's Center for Narcolepsy site. For links to other relevant research, try the Narcolepsy Network.
Want to get involved? There's a great non-profit called Wake Up Narcolepsy who I'm sure could use your help!
