Just got home from FDA Patient-Focused Drug Development Initiative Narcolepsy meeting...
I hope to organize all this info better when I'm a little more well rested (ha, ha) but in short, narcolepsy community came together, packed an auditorium at the FDA campus, and shared a wide range of experiences living with narcolepsy. My mom and I both learned a lot, and the FDA definitely got an earful about how hard it is to live with narcolepsy and how far-from-perfect the available treatment options really are. The meeting was very emotional-- having an audience with people whom we all hope can actually help us gave a sense of urgency to communicating the often heartbreaking challenges and complexities of a largely misunderstood disorder.
There's so much I want to write about yesterday, but I'm just gonna word-vomit the things that stuck out that I can remember right now:
-A vast majority of people in the room and online answering the polling questions said that the one symptom they find most disruptive to their life is excessive daytime sleepiness. I thought because cataplexy is so physically disabling it would be that, but the top two were excessive daytime sleepiness and accompanying brain fog and forgetfulness. (Amen)
-The FDA representatives often looked shocked, they must not have had much of an idea at all of what living with narcolepsy was actually like.
-Not just the FDA, it seems like not a lot of people at all know what narcolepsy is really like, even doctors. I'm lucky to live in a big city with accessible, quality medical care but I learned that I am the exception. I heard the story over and over of people being misdiagnosed, wrongly medicated, socially punished and/or living with horrible guilt for years before they found a doctor who had a clue. One woman related a story of being hospitalized by panicking friends during a cataplectic attack. No one at the hospital knew what cataplexy was. A doctor wound up putting her, fully conscious but paralyzed, through all kinds of physical tests to revive her (I had to cover my ears). She had even hurriedly told her friends before she fell that she had narcolepsy and cataplexy, and to "google it!"
-Xyrem, if it's not covered by insurance, can cost $10,000 per month. Holy hell. A more affordable alternative MUST be developed.
-Most PWN start showing symptoms of the disease between ages 11-17. Xyrem is NOT currently FDA-approved for this age group!
-A point that was made towards the end of the meeting: Naps are not a treatment. They are a symptom! The room clapped. Scheduled naps are suggested universally to optimize our wakefulness during the day, but it's less acknowledged how much of a hindrance this "treatment" can be to having a normal daily life.
-One specialist who was present said that every day a PWN experiences as much sleepiness as an average person who has slept for 2 hours per night for 2 to 3 weeks. Don't know why, but that stuck with me more than other stats have.
-Narcolepsy is a disorder characterized by a lack of the neuropeptide orexin (also called hypocretin). Apparently orexin regulates way more than sleep! There's a whole web of neurotransmitters that interact with orexin. Was told to look up a diagram, which I found here
-A couple of PWNs were saying that they've used Effexor, an antidepressant/SNRI, to suppress REM sleep. I hadn't heard of any drugs other than Xyrem that could be used to change sleep architecture.
-There were WAY more women in attendance than men, though narcolepsy is supposedly equally diagnosed between men and women. And the ratio was similar for the online attendees. I wonder why that is?
-A lot of women said that having kids and having narcolepsy is really, reallyreally hard.
-EVERYONE said that the Narcolepsy Network conferences are great and I should go. The one coming up in a few weeks is just way too much too soon but I think I will go next year.
-One particularly rough moment for me happened at the beginning of the meeting. I had a sleep attack and sunk down, leaning my head on my mom's shoulder. Thinking I was just being affectionate, she patted my head but wiggled away so she could better move her arm to take notes. I had to explain that I wasn't snuggling, I was passing out. That was pretty emotional for me.
There was a lot about yesterday that was draining and sad. I heard the stories of a lot of people who have suffered with narcolepsy for many years, and are coping but profoundly affected. I have a lot of worries for my future, but I am doing my best to be optimistic.
The most helpful thing about the trip was meeting another PWN for the first time. Coincidentally I was also the first PWN that she had ever met. I met a lot of people over the course of the day, but this woman was also in her 20s, seemed to have similar symptom severity to me and faced similar challenges. Whether or not we wind up keeping in touch, meeting her made me feel less alone. I also met Julie Flygare, whom I really admire. A couple of weeks after my diagnosis (and still deep in the deep-dark) I emailed her, and she wrote me back such a thoughtful and encouraging reply. Her blog, book and videos have been really comforting for me and informative for my family immediately post-diagnosis. As I told Julie, using her words I've been able to paint a picture for my loved ones of what my life is like, without having to do all that much painting myself. I'm really grateful to have met these women.
How's that for a mega-post?!
