• Shannon Jeffords Burkoth

2018 Narcolepsy Network Conference; A weekend with MY people and a message of HOPE!

At the Annual Narcolepsy Network conference this past weekend in Indianapolis, Indiana, I was honored to facilitate the Newly Diagnosed support group and spoke on a panel regarding Parenting with Narcolepsy. The conference was amazing as usual, but what really stood out this weekend was the HOPE brought about by several potential novel treatment options in the pipeline, the most ever thought possible! A big thank you to Harmony Biosciences LLC, Jazz Pharmaceuticals, and Avadel for investing in our community!!! When I was diagnosed with narcolepsy in 2010, I shortly learned there were no treatment options for me because of a comorbid heart disease and also because I did not respond well to other medications available at the time. For the first time since then, I am hopeful for treatment that may improve my DAILY quality of life! Yes, this invisible, serious & often misunderstood disease impacts daily life for those living with it. Narcolepsy is a rare disease, affecting 1 in 2000 people. People living with this neurological disease are found to be lacking the neurotransmitter hypocretin or orexin, which regulates the sleep-wake cycle. Without hypocretin our sleep cycles essentially have gone rogue, sleepiness intrudes in our wakeful hours and wakefulness intrudes in our sleepy hours. With sleep attacks comparable to healthy individuals going without sleep for 48-72 hours, imagine YOUR cognitive function at this level of exhaustion! The main symptoms of narcolepsy include excessive daytime sleepiness, cataplexy, sleep paralysis, hallucinations, and fragmented nighttime sleep. The average age of symptom onset is ages 11-25, and an average time to diagnosis of 8-15 years! These numbers are the reason I am passionate about raising awareness for narcolepsy. Highly stigmatized due to false representation in the media, narcolepsy is a serious debilitating disease that is no laughing matter. Other highlights for me of the conference included updates from the ongoing task force with the American Anesthesia & Sleep Medicine Association on research regarding anesthesia in patients with narcolepsy in a perioperative setting. Hearing patient stories from other advocates such as Ladies Pro Golfer Nicole Jeray and Racing for Rest's Emily Kreuziger, both were phenomenal. There were sessions on professional panels, medication panels, diet and lifestyle tips, education & employment accommodations, family planning, dreams, support groups, fundraising & advocacy. I especially enjoyed seeing the growing amount of college age students attending and connecting with each other! Social support is so very crucial for anyone dealing with an illness. I also loved seeing my friends from Chicago’s Midwest Narcolepsy Support Group, the first people I had ever met with narcolepsy, the ones that made me feel normal again after my diagnosis. Connecting with other people with narcolepsy is so therapeutic for me. As the Program Mentor for Project-Sleep's Rising Voices of Narcolepsy, I finally got to meet some of the amazing graduates from this year's program! To meet them face-to-face was an enormous highlight for me. These individuals are so passionate, I am so happy to be able to advocate alongside them and encourage them! I also got to spend time with Julie Flygare, the founder of Project-Sleep and RVN, she has a huge heart and is an outstanding mentor and co-advocate! I ended the conference by attending the Advocacy workshop led by the amazing Carrie Ostrea, of Ostrea Consulting. Carrie is responsible for igniting my spark for advocacy almost three years ago now. I continue to learn so much from her wealth of knowledge, wisdom, and passion. I would highly recommend this workshop for any non-profit conference out there. Thank you Narcolepsy Network for all that you invest into the lives of people with narcolepsy. This conference continues to spark bonds that last a lifetime and is so meaningful to all that attend. Thank you to the people that make this happen, Eveline Honig (Excutive Director), Sarah Didavide, the entire board, staff & volunteers, your hard work and efforts are so appreciated!

See you all in Albuquerque next year!

xoxo- Shannon

Click on my Pictures tab to see more photos from the conference!

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