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Narcoleptic Teen Brings Message to Washington
Imagine taking a sleeping pill and then trying to stay awake the entire day. That is kind of what it feels like to have narcolepsy.
Narcolepsy is a relatively rare disorder that affects the bodys ability to control regular sleep-wake cycles.
Brandon Coonrod, of Chatham, was diagnosed two years ago. Before medication he watched his grades drop, his teachers shake their heads and his friends laugh.
Now he has a very serious message that he is taking with him all the way to Washington D.C.
"At first we just thought we had a lazy, typical teenager son," Brandon's mother Gina Coonrod joked.
Brandon could not keep his eyes open throughout a single class no matter how hard he tried. His teachers made snarky comments.
"'The rest of us will be doing homework and Brandon can go finish his nap,'" Brandon Coonrod said of his teachers. "You know. It's not their fault," he said.
They didn't know and neither did the Coonrods. Brandon has narcolepsy.
"[It] kind of felt like I was sleeping through life," Brandon Coonrod said.
Brandon is now on a pair of medications and a gluton-free diet.
"In a way I didn't realize how tired I was until I felt like normal again," Brandon Coonrod said.
Brandon cannot live his dream of joining the military and getting his license next year might come with some strings. But he can hope for a better future.
"He submitted a questionnaire to maybe be a panelist," Gina Coonrod said.
For the Food and Drug Administration's Narcolepsy Public Meeting just outside the nation's capitol.
"And they only chose 10 from the country," Gina Coonrod said.
Brandon will be one of the youngest to speak next week.
"Yeah I gotta get a speech written before then," Brandon Coonrod joked.
A task Brandon's not worried about. He is a fan of public speaking. He wants to go into politics. And he knows just what he'll say to the FDA.
"Hopefully through this they can get a better understanding of what it's like to live with narcolepsy and why they should pursue research and fund research in this field. And just hopefully through that maybe get some better medication and some possibly even a cure for those people with narcolepsy," Brandon Coonrod said.
Brandon says living with this disorder would be much more difficult if it was not for his supportive family-- particularly his siblings-- and his circle of friends.
The FDA's public meeting is Tuesday. It will feature patients like Brandon and doctors who are pushing for drug development.