Shannon

Burkoth

Public Speaker

Rare Disease & Narcolepsy Advocate

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Advocacy: Guest post by the brilliant Anne Bruns (annebruns.com)

Jul 13, 2018
5 min

Advocacy: Guest post by the brilliant Anne Bruns (annebruns.com)

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 o

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Taboo, a part of having Narcolepsy.

Shannon Jeffords Burkoth

Jun 25, 2018
3 min

Taboo, a part of having Narcolepsy.

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

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Advocacy has become my drug of choice, and I am addicted!

Shannon Jeffords Burkoth

Mar 22, 2018
3 min

Advocacy has become my drug of choice, and I am addicted!

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 Network (NarcolepsyN

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Cataplexy... narcolepsy's potential secret companion

Shannon Jeffords Burkoth

Mar 1, 2018
3 min

Cataplexy... narcolepsy's potential secret companion

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 aslee

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Gone, vanished, disappeared!!!

Shannon Jeffords Burkoth

Mar 31, 2017
2 min

Gone, vanished, disappeared!!!

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

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Baby, you're worth it! Assembling an all star care team...

Shannon Burkoth

Jan 17, 2017
4 min

Baby, you're worth it! Assembling an all star care team...

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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“I know I’m Different From Other Kids” - A Conversation With My Daughter. - Guest Post by Claire Cri

Shannon Burkoth

Dec 13, 2016
4 min

“I know I’m Different From Other Kids” - A Conversation With My Daughter. - Guest Post by Claire Cri

I met Claire and her daughter Mathilda at the Narcolepsy Network conference this past October in Orlando, FL. We sat together for breakfast one morning. Claire's daughter Mathilda is ten years old and she has Narcolepsy and Cataplexy, just like me. It is interesting to see the narcolepsy journey from both a child's and parent's perspective. You can read her blog anytime at clairecrisp.com. Claire is also a Rock Star advocate for her daughter and the narcolepsy community...Tha

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The disappearance of "Me"

Shannon Burkoth

Nov 16, 2016
6 min

The disappearance of "Me"

So now its time to get personal. Ive written a few blog posts now, basically reviews on some recent events I've been able to attend on Rare Disease and Narcolepsy advocacy. I feel empowered to tell my story. Life is not easy sometimes, we all have our burdens to bear. I truly believe God uses these moments in our lives to help others along the way. This post is really personal for me, but I write it with a vulnerability to allow others to see hope. Here we go... I have always

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Meet Evan, he has a #RareDisease Polymicrogyria (PMG), and his Mom, Tara, is a Rockstar Advocate!

Shannon Burkoth

Oct 31, 2016
2 min

Meet Evan, he has a #RareDisease Polymicrogyria (PMG), and his Mom, Tara, is a Rockstar Advocate!

I met Tara at the Global Genes Summit in sunny California last month. We met in the elevator when we first arrived at the hotel. She seemed pretty nice, we exchanged pleasantries, found out we were both there for the summit, she was there as a parent advocate and I was there as a patient advocate. We headed off to our rooms. We met again the following day at one of the breakout sessions at the end of day 1 and started chatting about one another's lives, kids, why we were the

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2016 NN Conference in Orlando, FL & More

Global Genes 5th Annual Rare Disease Advocacy Summit

Shannon Burkoth

Sep 27, 2016
2 min

Global Genes 5th Annual Rare Disease Advocacy Summit

I had the honor of attending Global Genes Rare Patient Advocacy Summit this past September and it was inspiring! I first became familiar with GG at their Narcolepsy Meet Up Tour in Chicago this past July, where I was invited and encouraged to attend this summit. Because the Meet Up Tour was so successful, I decided to travel to California for this event as well, and I am glad I did! There are over 7000 Rare diseases most of which have little to no treatment available, includi

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2016 GG/NN Narcolepsy Meet-up Tour

Shannon Burkoth

Jul 27, 2016
1 min

2016 GG/NN Narcolepsy Meet-up Tour

I was extremely fortunate to attend the Narcolepsy Meet Up in Chicago, IL, in early July. I was diagnosed with Narcolepsy and cataplexy in 2009, symptoms date back to my high school days though. I was especially looking forward to this meet up because a friend of mine was just diagnosed this past February and she was able to attend as well. We both benefited tremendously from this event! The Global Genes staff were extremely caring, kind, professional, organized and fun. The

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