![]() For those with narcolepsy type 1, cataplexy can be as impactful, both full and partial. People with narcolepsy know the overwhelming experience of excessive daytime sleepiness, we all share that in common. I started with the highlights of unmet needs. While all of this may sound overwhelming and complex, the report relays the data in graph format – making the complex less intimidating to review. There is a hierarchal organization of terms, and often there is overlap between the usage. The report describes a lexical (relating to words) analysis it breaks down statements into burden and management categories based on context. Unpacking a report of over 40,000 comments is daunting. With the help of their data processing engine named “Krystie,” the Prader-Willi syndrome community recognized the correlation between PWS and type 1 narcolepsy leading them to medications that could provide relief. TREND has a history of uncovering new directions and areas of focus. As impressive as that sounds, this is only the first step. A collective voice spoke out for the first time publicly. Over 15,000 people with narcolepsy and their support members shared their stories of struggles, strength, and sleep. World Narcolepsy Day 2021 was a day to celebrate. While maintaining anonymity, they distilled the words of over 15,000 individuals in over 40,000 comments. In cooperation with, TREND analyzed data from the PWN4PWN Facebook group and the subreddit r/narcolepsy to create a report unlike any other. Information and breakthroughs are flowing with an abundance of new data. What if there was a way to harness the conversations taking place behind the curtain? What if there was a way to use that data to provide a unique report specific to living with narcolepsy? Those aren’t hypotheticals. It’s where life lessons on narcolepsy are learned and taught. Conversation flows easily behind a veil of anonymity and privacy. That is where the proverbial rubber meets the road. I feel comfortable publicly sharing vignettes about my life with narcolepsy, yet I reserve some questions for small groups, online support groups, and message boards. For me, the strength it takes to speak openly about living with narcolepsy comes from a desire to raise awareness and reduce time to diagnosis. Many spoke out for the first time publicly. Hundreds of people with narcolepsy and their support members shared their stories of struggles, strength, and sleep. Reading between the lines…TREND Community Voice Report ![]()
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