The FDA public meeting to gauge patient perspectives on narcolepsy / cataplexy took place yesterday (24th September 2013) in America. A recording of the meeting will be posted here, although may not be live just yet. Ten patients bravely sat on the panel and described how the condition affects them and their families. As you can imagine, peoples stories were emotionally charged and heart breaking to hear; with recurring themes of self-loathing, guilt, fear, shame and embarrassment being described. Their willingness to provide such open and honest accounts of their lives should be applauded and I thank everyone of them for being brave enough to tell the
world about the realities of living with narcolepsy / cataplexy. It was incredibly important step in conveying the complexities involved and no doubt an incredibly important moment for each panellist on a more personal level. I'm sure I wasn't the only one needing a box of tissues. Here are a few quotes that I managed to note down...
world about the realities of living with narcolepsy / cataplexy. It was incredibly important step in conveying the complexities involved and no doubt an incredibly important moment for each panellist on a more personal level. I'm sure I wasn't the only one needing a box of tissues. Here are a few quotes that I managed to note down...
"A nap is not 'therapy'. A nap is NOT therapeutic"
"A nap is not a therapy, it is a symptom. It happens anywhere"
"Naps vary. Some need 20 minutes, some need 2 hours. At what point do 'naps' become a problem and not a treatment"
"A nap is not a therapy, it is a symptom. It happens anywhere"
"Naps vary. Some need 20 minutes, some need 2 hours. At what point do 'naps' become a problem and not a treatment"
"Giving me drugs to keep me awake during the day or help me to sleep better at night is essentially like giving me band-aids."
"I'm losing more than just a couple of hours sleep"
"I can't hold down a job because I can't rely on my brain to function consistently"
"Narcolepsy tells me when I can shop.
Narcolepsy tells me when I can go out.
Narcolepsy tells me when I can drive."
"Diagnosis means a label and a label means I'm not a bad mother"
"I want to control narcolepsy, not have narcolepsy control me"
"In today's world, 'tired' is not an acceptable excuse"
"It's all about Orexin. We need Orexin replacement somehow"
"I would really like to be the last of the children that had no choice but to sleep through a bright future."
The meeting also featured some short presentations, including those from Julie Flygare (author of the book 'Wide Awake and Dreaming'), Monica Gow (co-founder of the charity 'Wake Up Narcolepsy' & mother to a PWN) and Mark Patterson (Paediatrician, a father to a PWN and trustee of Narcolepsy Network).
In addition to this over 700 people worldwide also took part via an online link and were given the opportunity to contribute through a comments box throughout the four hour meeting. I felt very privileged to be part of this process and remain hopeful that it will eventually become a useful tool in providing pharmaceutical companies a valuable insight into what treatments we, as patients would like to see developed.
All information gathered will be incorporated within a public document and it's not too late to contribute. People can still comment and participate within the final stage process by submitting comments via this link until 25th November 2013.
In addition to this over 700 people worldwide also took part via an online link and were given the opportunity to contribute through a comments box throughout the four hour meeting. I felt very privileged to be part of this process and remain hopeful that it will eventually become a useful tool in providing pharmaceutical companies a valuable insight into what treatments we, as patients would like to see developed.
All information gathered will be incorporated within a public document and it's not too late to contribute. People can still comment and participate within the final stage process by submitting comments via this link until 25th November 2013.
WE ARE THE EXPERTS AND THEY WANT TO HEAR OUR OPINIONS.
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