From playing the victim to becoming a survivor, this is my journey with narcolepsy and rare disease. I choose to fight, to raise awareness, end stigmas and to hopefully help others along the way...


I finally met the fabulous Anne Bruns, a fellow rare disease advocate extraordinaire, at the World Orphan Drug Congress 2018, this past spring, and she did not disappoint! We had been following eachother on social media for a while and felt as though we already knew one another, it's a rare sister thing, meant to be. We are traveling to London together this fall and cant wait to post about out advocacy efforts and shenanigans while we are there!

Anne wrote this amazing post on...

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Melissa, you're Famous!!! This is my sleepy sister!
Meet Shannon
Hi! My name is Shannon and I am a rare disease advocacy professional. I was diagnosed with the rare disease narcolepsy with cataplexy in 2010. No, it's not at all like you see it portrayed in the movies. If you'd like to know more about narcolepsy you can visit the tab in the menu above.
My blog is about me, my life with narcolepsy, my adventures in advocacy and doing what I can to make a difference to help those also affected by rare disease and illness. I am passionate about this cause as you will hopefully see in the stories written here. I draw my hope from my faith in God.
Thank you for reading and feel free to leave a comment now and again. :)))
Wishing you all big smiles, lots of laughter, and love for life no matter how it looks!!! 

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