Community Health Leaders
Last updated: January 2023
In order to stay up to date on the latest treatments, drug discovery, clinical studies, and how to cope with narcolepsy every day, Narcolepsy.Sleep-Disorders.net brings you frequent articles, points of view, and advice from health leaders and experts.
Current health leaders
Tre Burge, from eastern Iowa, Diagnosed with Narcolepsy w/Cataplexy at the age of 18. Though a long and arduous process uses his platforms to educate and raise awareness. Tre runs a small business and works as a Paraprofessional and YDP. Read more.
Kerly Joy Bwoga
Kerly Joy Bwoga, age 38. I work as a personal assistant. I was born in Jamaica and have lived in London, UK, from the age of 7. I love helping people, which may originate from both my parents being teachers. Read more.
Tatiana Maria Corbitt is a 24-year old first-generation university graduate born and raised in the Sonoran Desert of Arizona. She earned her M.S. in Applied Biological Sciences from Arizona State University, where she also published her undergraduate Barrett, the Honors College thesis investigating the FAA’s research and regulation of insulin-treated diabetic pilots. Read more.
Lauryn Craine is a recent graduate from Missouri Valley college. She graduated with her Bachelors in English. She writes for fun and as a career. Her writing focuses on pop culture, disability and academic content. Read more.
Judy is a 24 year old classical musician from Melbourne, Australia. In 2019 she was diagnosed with Type 1 Narcolepsy with Cataplexy after a long, and bumpy road to diagnosis. Read more.
Lauren is a 30-year-old advocate and writer who is passionate about intersectional disability justice. She experienced her first symptoms of narcolepsy (type 1) at around 13 but after many doctors' visits over the years, was not diagnosed until the age of 20, in 2011. Read more.
Tiffani has narcolepsy with cataplexy and restless leg syndrome. She was first diagnosed with narcolepsy type 2 in August 2020 at age 44. After six months of treatment for excessive daytime sleepiness (EDS) she reached out to her sleep doctor to let him know despite her best efforts to go to bed and wake up at the same time every day, she was getting less and less sleep, and her EDS was getting worse. Read more.
Matthew Horsnell is a person having narcolepsy with cataplexy, obstructive sleep apnea, and restless legs syndrome. He received his narcolepsy with cataplexy and restless legs syndrome diagnosis when he was 25 years old: however he has been experiencing symptoms since he was twelve. Read more.
Gabrielle is a 25-year old music teacher from Kentucky. She was diagnosed with type two narcolepsy in September of 2018 after living her whole life with constant fatigue and exhaustion. She was misdiagnosed with several other conditions including hypothyroidism, depression, and anxiety. After several years of failed medications and vivid dreams, she was finally referred to a sleep specialist. Read more.
Bella is 24 years old and lives in the UK. Bella is a psychology graduate from Loughborough University and currently works as a pharmacy dispenser. She started experiencing symptoms aged 16 whilst studying for her A levels - a crucial time as she needed to do well in order to secure a place at university. Read more.
Lindsey Kizer is living with Narcolepsy with Cataplexy, Restless Leg Syndrome and other health conditions. Growing up even at a young age she was always the “sleepy child” and her father’s nickname for her was even “Sleeping Beauty”. Although she always remembers being sleepy, she recalls many of her other symptoms beginning during her 5th grade year after dealing with strep throat several times and mono. Read more.
Kenzie Mackin was initially diagnosed with narcolepsy without cataplexy in August 2021 at the age of 22. She began blogging about her experiences with narcolepsy, including her early onset of symptoms and her process to diagnosis. Read more.
My name is Tara O’Connor. I am almost 24 years old and I have narcolepsy. I am a volunteer EMT, auntie, and narcolepsy advocate. I went well over half of my life having symptoms of narcolepsy and getting a wrong diagnosis. Before I was diagnosed with Narcolepsy, I always felt like there was something off with my body. Read more.
Nessie is a scientist in the biopharmaceutical industry and a mother of two teenage boys. She graduated from Youngstown State University (Ohio) with a Master’s and Bachelor’s of Science in Chemistry with a focus in Biochemistry. She found out she had mild obstructive sleep apnea and narcolepsy at the age of 37, after being misdiagnosed since about the age of 14. Read more.
Jenean was diagnosed with Narcolepsy Type 1 when she was 37 years old. As a mother of four, she was having difficulty completing daily tasks and staying focused. Waking in the morning became problematic and falling asleep at night was even harder. Read more.
Iris’ family background originates from Portugal and Angola (S.W. Africa) but at the age of seven years old (as the youngest child) she followed her mother’s relocation to London, United Kingdom and this was where Iris stayed until the age of 24. Read more.
Elle Wales is a mental health peer worker from Sydney, Australia. She is also a graphic designer, writer, and narcolepsy advocate with a passion for presenting an authentic picture of the ups and downs of living with narcolepsy. Read more.
In high school, Alyssa Walker was an amazing athlete. She was on the basketball team, captain of the track & field team, and a star dancer for a private dance company in the city of Indianapolis, IN. As an active civil citizen, she would volunteer and attend church engagements (choir practice and teen ministry bible studies) during the week as well. As a result of being so active, she would often have back to back practices and events, so when she began falling asleep during the day, this seemed normal. Read more.
Previous health leaders
Feri is a 53-year-old narcolepsy advocate from The Netherlands. After 6 months visiting a neurologist he self diagnosed by accident, watching a tv talk show. That is 23 years ago now. He tries to get more attention for the secondary consequences of narcolepsy in the US as also in Europe. Read more.
Christina Christensen has struggled with being extremely tired since she could remember. She would fall asleep places most people wouldn’t and as the years went by, the tiredness got progressively worse and it became harder to be successful in school, stay awake at work and drive long distances. She finally had a sleep study conducted when she was 25 and received a diagnosis she didn’t see coming. Read more.
Diagnosed with Type 1 Narcolepsy back in 2014, I had unknowingly been fighting the never-ending battle that is Narcolepsy dating as far back as 1999. Throughout the duration of my diagnosis I endured unruly mistreatment by medical professionals and helplessly watched others rob me of the option to pursue opportunities every person deserves to experience. Read more.
Keeley Lange is a wife, homeschooling mom of 4, and a self-diagnosed Crossfit addict. She spent the first 30 years of her life, without a single narcolepsy symptom. That all changed in 2012 when she first started experiencing symptoms. She was diagnosed in 2014. From the get go, Keeley has chosen to be unmedicated while pursuing symptom relief. Read more.
Rebecca was formally diagnosed as having Narcolepsy with Cataplexy in 2016. All I could do was cry tears of happiness. There was now an answer for my constant fatigue, muscle loss, brain fog, and countless other symptoms. I knew deep down that not all of these symptoms were a normal part of “being a college student” or “having ADHD”. Read more.
Hi my name is Aaron Nuest and I'm a Registered Polysomnographic Technologist (RPSGT). I’ve worked as a sleep technologist for over 10 years! I’ve heard several hundred stories of sleep issues. Read more.
Tamara Sellman, RPSGT, CCSH is a career journalist (Columbia Chicago, ’90). She was diagnosed with idiopathic hypersomnia and upper airway resistance syndrome (UARS) in 2010. Her sleep problems inspired her to go back to school to become a sleep technologist in 2012 and a professional sleep educator in 2014. Read more.
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