Watch Now: New Video on Narcolepsy, Sleepiness & Invisible Illnesses
Recently, I was honored to join a group of rockstar advocates and innovators for a fantastic discussion and experimental filming exercise! Check out this awesome first video highlighting narcolepsy, sleepiness and invisible illnesses:
When you get invited to an “experimental filming dinner party” in the Hollywood Hills where there’s no cellphone service, you may feel a little uncertain… like a character in the movie Clue showing up at the old dark mansion alone perhaps?
But when Dr. Larry Chu is the person inviting you to this dinner party, you say “Yes!” right away, and quickly cancel your plans (even though you were supposed to host a board game party with neighbors that night). Or is that just me? Lol.
Special thanks to Stanford’s Dr. Larry Chu, an amazing leader and the genius behind Stanford’s Medicine X and Everyone Included™. Dr. Chu promotes a culture of respect, honesty and thoughtful in re-designing healthcare. In addition, thank you to Paul Shepherd for his great videography and my fellow advocates and innovators Sarah, Britt, Audun and Thomas for your kindness and open minds.
Everyone Included™ is a framework for healthcare innovation, implementation and transformation based on principles of mutual respect and inclusivity.
Stanford Medicine X is a catalyst for new ideas about the future of medicine and health care. It is an academic conference and program designed for everyone. We aim to bring all healthcare stakeholders together–patients, providers, technologists, and researchers–to innovate healthcare through the thoughtful use of emerging technologies.
Watch my Stanford Medicine X 2015 Ignite Talk:
I always enjoy your current information regarding narcolepsy. I had a young man come by my house a little over a month ago. He was studying to become a videographer and also had narcolepsy. Andrew, another member of the L.A. Support group came by my house to support me as I did not know the young man. He interviewed us in my drive way. I haven’t heard from him so I don’t know how it came out. He was attending an Art School in Santa Monica.
I loved this and am looking forward to more episodes.
I had gone to a Dr at a teaching clinic, thinking that they might be more open to learning something new. I had with me the questionnaire from Stanford Centre for Narcolepsy (which was the first thing they asked for when I finally went to the UBC sleep clinic) He told me that they had their own sources and you can’t believe everything you read on the Internet, while at the same time admitting that the only thing he knew about narcolepsy was from tv and the movies.
He said he would refer me to the sleep clinic, but they had a really long wait list. Six months later I phoned the sleep clinic to find out where I was on the wait list and they had never heard of me.