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...

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 Avade...

"Life isn't about waiting for the storm to pass; it's learning to dance in the rain" -Vivian Greene

Hard times suck, plain and simple, no one likes them, including me! But when you push through them, on the other side you will find a new, stronger version of yourself that you never knew was there!

There's no one better to bring comfort to you when you are going through your storms in life than someone who has been there themselves. Relatability, experience, empathy, advice,...

7.13.2018

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...

I vividly remember the day that I awoke in the middle of the night in a panic as I realized my bedroom was filled with smoke and my house was on fire! I could see, smell, even taste the smoke it was so thick. Full of adrenaline, I frantically woke my husband to get our daughter out as I reached for the phone to dial 911. He quickly jumped up and then... just stood there, staring at me in confusion. He did not see what I did, he said there was no smoke! I was confused and even...

There was a fine line that divided the tingling sensation I was feeling on the left side of my face and chest, and down my left arm. My chest felt heavy and my breathing was labored. I was confused and exhausted, my head hurt. I leaned against the wall for support and slid down slowly to the floor. I asked my co-worker to call 911.

I arrived in the ER by ambulance, thinking that I may have just had a stroke. Tests were ordered and completed. I was told I was fine, that there w...

Drug addiction and abuse have been a hot topic lately. Personally, my body does not metabolize medication very well so I am left with very few options to treat my conditions. After failed treatments for narcolepsy and more health problems, I became disabled at the young age of 35. 

This was not the plan and I was mad to say the least. I played the victim to my illness for too many years than I like to admit.

In 2016, I received an email from the Narcolepsy N...

Happy #SuddenlySleepySaturday and #SleepIn2018! A day of #awareness for #sleep and #sleepdisorders 😴. This is my beautiful family, #narcolepsy affects everyone in my family. I may be the sleepy one, but they are my rock! Without these 2 incredibly amazing people, I would not be able to do what I do and have the life that I have 💖. Despite my disability, they love me, help me, encourage me, put up with me being crabby when sleep fails me (alot 😜), make me laugh when I want...

Narcolepsy has long been thought of as simply a sleep disorder where people get sleepy & pass out or even get to take luxurious naps. This perception is fueled by false representation in movies and media. Narcolepsy is a neurological disorder affecting the sleep and wake cycles.

The main symptoms of narcolepsy include:
Excessive daytime sleepiness - comparable to someone without narcolepsy being awake for 48-72 hours. (Cognitive deficits)
Hallucinations upon falling asleep o...

So what causes narcolepsy anyways and what is it really? Those are two very interesting questions indeed! Questions that I would never would have known had I not been diagnosed with it myself. You see, narcolepsy is not at all as it appears in the movies or on television, in fact, it is not very funny, but it IS very intriguing! The very reason I started this blog was to help raise awareness and advocate for people with narcolepsy, knowledge is power. Knowledge leads to quick...

1.17.2017

Let me start by saying that being a doctor has to be one of the toughest jobs out there. I mean, the human body is so complex and we are all uniquely and wonderfully made! Some of us more complex than others. For one person to know everything about every part, cell, gene, bone, system, organ, etc..., well is just impossible! I've never been to med school and cant imagine the intense training involved and pressure to always get it right, holding someones life in your hands at...

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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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