Not Alone with Narcolepsy | Candid Conversations with Rising Voices of Narcolepsy

Some of us craved connection, others were reluctant to meet fellow people with narcolepsy.
In this video, our Rising Voices of Narcolepsy speakers and Julie Flygare, Project Sleep's President & CEO and woman living with narcolepsy, talk about their path to finding the power of community. Each person's journey is so unique.
RISING VOICES OF NARCOLEPSY is Project Sleep's leadership training program to raise awareness about narcolepsy while also empowering a new generation of patient advocates sharing their stories via writing and speaking.
ABOUT THIS VIDEO SERIES: While our trained speakers are delivering 20-minute presentations in-person to audiences across the U.S. and internationally, we brought a few speakers together to adapt their presentations into this video series, so that their stories can reach more people around the world. SHARE this video to raise critical awareness!
Learn more and get involved : project-sleep....

[@wondolow1]

I cannot express how much these videos encourage me. Knowing that I'm not alone just in listening to your testimonies makes me feel less alone and discouraged!

[@jokerpoker2012]

I feel like one of the hardest things with having Narcolepsy is trying to work and be treated like anyone else instead of being treated negatively. Its extremely frustrating when people wont grasp the concept of it and assume your just making things up. I'm very open about it even though it's very difficult to because of allowing yourself to be so vulnerable. I also take many meds including xyrem at night. Friendships are definitely really hard as well due to the fact of not always feeling up to socializing or having the energy to go out. I got diagnosed in my thirties which is not as common. I also took care of people with dissabilities and mental illnesses. At first I thought I grasped the idea of what it might be like and what they were going through but boy was I solely mistaken. I felt after going through this I could relate so much more to my clients and actually understand the challenges and obstacles they faced daily. It's really sad that even doing that kind of work and the company treats you as a defective staff or a burden. It is so devastating that they would rather find ways to make you uncomfortable or feel bad vs supporting you and trying to make your life better. I definitely feel that Narcolepsy needs to be more known with real people who talk about their day to day struggles instead of preaching some perfect fantasy of a life that you may never get the chance for.

[@purplevoice1363]

J money I totally agree. Thank you for sharing this.

[@purplevoice1363]

Could we get a video about medications, insurance and things like that? I’m 19 and I currently can’t afford insurance. My mother, my only parent, cannot work bc of her own disability, so she also does not have insurance. Ritalin and adderall did not work for me and the two anti depressants I tried for my cataplexy made me feel suicidal. I’m not sure what to do at this point bc I can’t afford insurance or to try new medications. I work minimum wage and I’m having a really hard time even keeping this job. I’m debating dropping out of college bc I can’t stay awake in class and I can’t finish hw. I just don’t see a future for me and it sucks bc I’m so young. I guess I’m just wondering if other people with narcolepsy are similarly struggling? If there’s better options?

[@ankaroro]

Casi no encuentro nada sobre esto en español. Y a quien colombia muy poco se toca el tema. Me gustaría hablar con alguien :'c

[@maxculver1307]

Please help me out? I have a successful business and opportunity to work but cataplexy and narcolepsy has encouraged me to not give up. But i need someone to talk to

[@maxculver1307]

I just need a friend