Manage episode 292545065 series 2926147
Shannon Burkoth is a person with narcolepsy, mother, and narcolepsy advocate in the rare disease space.
In this episode, Shannon shares how she was diagnosed with narcolepsy when she turned 30, but since then has realized she experienced narcolepsy symptoms since she was a child. Shannon also offers her journey to finding the right doctor and medication. She highlights how people with narcolepsy often deal with multiple comorbid issues which can be exacerbated with the wrong medication.
Shannon also shares her journey to becoming a narcolepsy and rare disease advocate. She highlights the grief experience after being diagnosed and no longer able to do the activities she once enjoyed. Through conferences, meeting other advocates, and participating in the Rising Voices of Narcolepsy program, Shannon is empowered to share her story to educate and create awareness.
Shannon thank you for your advocacy! You can follow Shannon at @shannon.burkoth on Instagram and @sburkoth on Facebook. You can learn more about Shannon’s advocacy work at shannonburkoth.com. Shannon says, “I want all people with narcolepsy to know they are not alone and there is an incredible community waiting to embrace them!” Shannon recommends Project Sleep’s Rising Voices of Narcolepsy program, Wake Up Narcolepy’s Online Support Groups, Narcolepsy 360 podcast, Wake Up Narcolepy’s Family Camp for CWN and Narcolepsy Network Annual Patient Conference.
You can follow us at @narcolepsy_360 on Instagram, @wakeupnarcolepsy on Instagram and Facebook and @wakenarcolepsy on Twitter. Let us know your thoughts about this episode by using the hashtag #narcolepsy360 and please rate and review us on Apple Podcasts.