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Celebrating World Narcolepsy Day

October 2nd, 2019

Thank you to everyone who sent in a stories for World Narcolepsy Day.

We were able to share your stories on social channels all day long! Through these stories, we are changing the mispersceptions of narcolepsy.

If you missed our posts, read through the stories below or send us your story by emailing info@narcolepsynetwork.org.


“I was born with Cerebral Palsy. No one tells you a lot of other problems can steam from that. [I] always struggled with sleep – being tired and nighttime insomnia, ever since childhood. Fourteen years ago I had a sleep study. After the study all I heard about was apnea. The study included a nap series. Seems I am always misdiagnosed. It took almost ten years and a sleep specialist to look at the study to say the apnea score is only 2, but the nap series shows narcolepsy. After countless doctors, four meds and ten years, I’m now awake. I’ve lost weight and in the best shape of my life. Night insomnia is rarely bothersome these days. I now love life, like I used to love sleep.” – Amber


“Persistence is key, always. I don’t want to get out of bed, but I do. I view the day ahead of me, school and work, as a summons to complete and, better yet, to exceed. I’m proud of the obstacles I overcome on a daily basis, and I will never give up or feel sorry for myself. My narcolepsy does not define me.”
– Jessica Arvayo




“I overcome narcolepsy everyday by the strength from my faith and the support of my family.”
– Shannon Burkoth

 

 

 


“#mynarcolepsyhero is my son, Silas. Silas is an avid skater and runner, despite his narcolepsy. Silas is the best at advocating for himself, even at 14! He is more than willing to educate his teachers and friends about his neurological condition. One of Silas’s dad’s friends recently was diagnosed with narcolepsy. He only got tested because of talks with Silas sounded so similar to what he has been going through since high school.” – Christine, Silas’s mom

 


“I was diagnosed with narcolepsy (without cataplexy) in September 2009, about 14 years after my symptoms started. In retrospect, I’m thankful for my delayed diagnosis as my beloved Air Force career would have no doubt been in jeopardy had I been diagnosed while on active duty. Diagnosed 2 years after I retired, I spent a little time feeling sorry for myself, but I had such an amazing life as a wife, mom, Army civilian employee, and side-gig photographer that I decided #ihavenarcolepsybutitdoesnthaveme and never looked back! Ten years later I’m managing my symptoms the best I can, embracing each and every day of this #blessed life, and using some of my skills to become an advocate for others like me and to increase narcolepsy awareness worldwide!” – Kristin Clark


“#mynarcolepsyhero, Mackenzie, travels the world, competes in sports, attends college, lives on her own, volunteers in an ALS lab, and looks forward to serving others as a Physicians Assistant in the future.”- Cynthia, Mackenzie’s mom

 





“I was first diagnosed with narcolepsy and cataplexy 3.5 years ago, which was also my first year working as a registered nurse. Before that time, however, I had starting date this guy, Josh. On the first or second date, I told him that I had this “weird thing” that when I laughed, I “passed out” but not to be worried. He was worried though because he is one of the funniest people I know and he wasn’t sure if he could be funny around me. Luckily, we figured things out. He’s been my biggest support, both physical (when it comes to cataplexy) and emotional. He has been there through my diagnosis, my issues with insurance, and my issues with work accommodations. He has stepped up around the house by cooking more meals and making sure I get to bed on time for my nighttime medicine. I don’t know where I would have been without him. Thankfully, I don’t have to because on Nov. 9, 2019 we are getting married. I’m looking forward to the life we will form together for the years to come.” – Annie Embertson


“I have risen above narcolepsy by graduating with my BSN in May 2019 and passing my state boards as an RN in June 2019. I am now working as an oncology nurse.” – Tori Faison


 

 


“My narcolepsy hero is anyone that battles this disease, but today I want to spotlight my complete admiration and pride as I discuss my personal hero my daughter, Ava Fuentes. Ava is a 16-year-old girl that faces the battles of narcolepsy daily but does it with grace, courage, and persistence. I can’t imagine what it must be like to have this disease. I admire her ability to perform her school work and extracurricular activities at such a high level; it is a true inspiration to her family and doctor. I admire her strength so very much and her positive outlook on life – it is through her desire to bring hope and encouragement to anyone with narcolepsy. Who she will become is who she was created to be and what an amazing adventure it has been to watch. To anyone battling this disease, know that you are not alone and you are admired for your strength.” – Carli Fuentes


“I was diagnosed with narcolepsy when I was fifty, but I believe I have had it since the age of 12. I got back into cycling about five years ago. I ride 50 miles every weekend. I ride by myself because I cannot keep up on group rides. My working life has not been easy, but I will retire next year at the age of 60.”
– Greg Gardea

 

 


“After falling asleep on the back of a moving motorcycle, my loving husband bought and modified the backrest off of a much larger touring bike. With just three bolts, he can attach the seat to the special bracket and off we go. This weekend we attended the Thunder Valley Rally in Cottonwood, Arizona which is over two hours from our home.” – Gabby

 

 


“I am 23 years old and I have type I narcolepsy. I was diagnosed in 2017 in Puerto Rico, when I was 20 years old, but have had symptoms since I was 7 years old. I came from Puerto Rico at the end of 2017 after Hurricane Maria and throughout these last two years, I have been adjusting with my diagnosis. I am currently a full-time graduate student at the University of North Carolina. Living with narcolepsy is not easy, even with all the schedules, monitored diets, medications, and naps. However, my resilience is what gets me through my hard days. Narcolepsy has never solely defined me, but it is a part of me that I am no longer afraid to share with the world.” – Desireé Gorbea-Finalet


“My mother, Margaret, was diagnosed with narcolepsy around 1963, at about age 32. She had severe cataplexy as well. She lived with it until her passing in 2017, at least 54 years, probably longer than that. It’s suspected that she’d had it for years, but back then there wasn’t a diagnosis available. When she was trying to find out what was going on, she was told that it was many things: a mental illness, a bad habit, laziness, etc. My father was an aviator in the USAF and we moved a great deal. She had to maintain a household (which had to be packed up and moved about every six months to three years), two boys, stay positive with a husband not present much of the time, and still deal with this illness when treatment and diagnosis was in its infancy. I attended eight grade schools and three high schools and she had to be a mom to my brother and I through all of that. Frankly, as hard as it was to be a family member of someone who couldn’t be a part of our lives in the way she wanted to be, I can’t imagine how hard it was for her to live under these circumstances. There’s a life time of stories to tell about her, and our experience with narcolepsy. What I’m most happy about now is that there is so much more science about it, so much more awareness and help for those who have to deal with it. It’s good to know that my mom’s contribution, in many studies over the years, may have made a difference to someone living with narcolepsy now.” – Marc Hanson


“I have worked as Executive Director for Narcolepsy Network for 15 years now. Before that I worked for the Narcolepsy Institute in New York City. I do not have narcolepsy and neither does my family. I knew very little about narcolepsy from my medical school training, but as I learned very quickly, narcolepsy is so misunderstood. And I found out very quickly that PWNs “look normal”, but many suffer a great deal. Many PWNs are misunderstood, face discrimination, and suffer at work, in school, or in relationships. I made it my life mission to help and to raise awareness and acceptance.”
– Dr. Eveline Honig


“After spending thirteen years being undiagnosed and misdiagnosed, I finally found the answer when I was twenty-five. Narcolepsy with cataplexy was the answer. The question was why do I feel like I’m never rested and sleepy all the time, why do my muscles feel weak, and why do I slur my words at night. No one should have to wait that long for an answer. That is the reason why I choose to be a vocal and share my story through Rising Voices of Narcolepsy. That is the reason why I went to Washington, DC to advocate for increased funding for sleep research. That is the reason why I wanted to share my story for Know Narcolepsy. Raising awareness is the key to reducing time to diagnosis and reducing stigma associated with narcolepsy. I want to set a positive example to my three amazing kids. They deserve to have a Dad they can be proud of, who won’t back down from a fight, and who is taking ownership of his condition. I’m going to tell narcolepsy what I can do not allow it to tell me what I can’t do. I’m the World’s Strongest Person having narcolepsy with cataplexy – not because I lift the most weights, but because I choose to be every day when I wake up and get out of bed. It’s a mindset that anyone can apply. I want to share my story so people know they are not alone.” – Matt Horsnell


“Diagnosed with type 1 narcolepsy back in 2014, I had unknowingly been fighting the never-ending battle that is narcolepsy going as far back as 1999. Throughout the duration of my diagnosis I have endured unruly mistreatment by medical professionals, family members, friends, and mentors. I received devastating treatment from the university I was attending at the time. Despite the setbacks, I have accomplished all that I was told would be impossible and continue to defy the odds by relentlessly working on myself and what I strongly believe to be right. As an individual who has personally experienced the disadvantages as a child growing up with an overlooked chronic illness, I strive to advocate for those who are also battling a disadvantage that is misunderstood by caregivers and authority figures that are inevitably responsible for molding future generations. Every individual is capable of being a productive member to society and deserves the opportunity to seize what they deserve – happiness and the option to live life rather than hopelessly go through the motions.” – Nicole Kenyon


“I’m the one who could never stay awake in class. My school records are replete with comments questioning my parents’ ability to parent and whether I had an appropriate bedtime. Slept through college, law school, movies, car rides, and fell asleep while talking to people. Once missed giving a presentation at a conference because I could not wake up. I was not diagnosed until I was an adult. After finally conceding and accepting that I have narcolepsy, I started taking medication this year and it’s great to be able to stay awake for the first time in my life. My niece and one of my children have also been diagnosed with narcolepsy. I’ll be running in the upcoming NYC Marathon as part of Narcolepsy Network’s #TeamNarcolepsy to help raise awareness and money for this awesome organization.” – Piper Paul


“When I developed narcolepsy with cataplexy seven years ago it changed my life, but for the better. It allowed me to put my life in perspective and be grateful for the things I took for granted, like the ability to run outside or laugh at a funny joke. Thanks to the right doctors, treatment, and the most supportive network of family, friends, and colleagues, I’m able to live my best life without narcolepsy defining it.” – Jennifer Petti

 

 


“I am a 25-year-old woman from Oklahoma. I have been diagnosed with narcolepsy for almost one year to the day, however; I do believe my symptoms can be traced back for over a decade. I wanted to be an artist for as long as I can remember. I shifted focus from 2D art to 3D art and started learning to blow glass in college. About two years ago, my partner and I obtained our first glass torch. I sell my wares online and at various festivals and do live demonstrations of glass sculpting. It is my hope that my place as a business owner will become stable and I can continue to pledge a portion of my profits to research, support, and awareness.” – Melia Pitts


“I was diagnosed with narcolepsy without cataplexy in 2016, but I’ve had symptoms my whole life. The picture I’ve submitted is of me at work fighting to stay awake. Some days are better than others. I take medication for wakefulness – that helps, but not all the time, and have changed my diet. I try to keep a good sleep schedule, but that isn’t always possible. I don’t know how productive I’ll be from one day to the next, so I have had to learn how to work with my sleep disorder, rather than against it. I had to learn that it is okay to not do everything all at once, that it’s okay to take breaks. Getting diagnosed was actually a life saver for me, because I’d spent my whole life thinking I was lazy or crazy, and after learning more about narcolepsy, it all made sense. I’ve been able to understand myself better, and help others understand what I’m struggling with too.” – Katy Quirk


“Narcolepsy has never defined me. Narcolepsy has refined me. I’m stronger, more compassionate, I seek to understand instead of being understood, I choose to see life with the glass not just half full but completely full! For me, it’s a choice of your mindset. I realized you can’t control what life brings, but you can control what you do with it and I chose to take my biggest obstacle and make it my biggest growth opportunity! Each day I wake up and try and focus on all that I have to be grateful for, all my blessings in life, instead of letting the fog of this disease overcome me. It’s also key to have supportive and encouraging people around you – championing you along the way and willing to step in to help when needed (even when you don’t want to ask)! Having positive people in your life = positive energy transferred to you! Without narcolepsy, I wouldn’t be who I am today and I wouldn’t appreciate all that I have nearly as much. Some days are NO fun, but I wouldn’t change it. Narcolepsy doesn’t define me, it’s a part of me, and it has refined me into the resilient, optimistic, full of life woman that I am today!” – Hanna Stollmack


“#mynarcolepsyhero is my daughter Katie. She has raised awareness of narcolepsy in “Bachelor Nation” while a contestant on The Bachelor, Colton’s season, and Bachelor in Paradise Season 6 by openly discussing her challenges on her social media. Her kindness and caring nature shines through in her support of friends and actions with people she meets. Much less visible is the anxiety that often accompanies narcolepsy. Her most noticeable coping mechanism throughout adolescence and young adulthood was ACTION. She filled her life with activities such as cheer, dance, community service, and student government. She later became a member of the world renowned LSU Tiger Girls dance team, a choice which helped her to navigate the path to her college degree. As an adult she has continued to fill her toolbox with other coping skills – such as naps, lists, and reminders. Her goal to be self employed presents both a saving grace and struggle as self employment provides needed flexibility yet requires greater effort to establish routine. I am proud of how she braves these challenges to create a place in this world for herself.” – Vallery, Katie’s mom


“In the last couple of years, as I was trying to deal with quitting my career after becoming a teacher so young (20!), I got another certification online to become an educational diagnostician. I struggled to complete my internship hours, but I did (with LOTS of coffee). Then I started working on contract two years ago, working two to three days a week. I then decided to homeschool my children to get the most of my time with them and to give them a better education just by living! This year, I became a single mom, so I am now teaching online, while still homeschooling. Has it been easy? Not at all! I am not alone! My parents have been my backbone, and my children are my reason and motivation! Oh, and my sleep doctor is simply a blessing along for the ride on this journey that is my life! I have narcolepsy, but it does not have me.” – Victoria

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Date Created: October 2nd, 2019
Last Updated: October 10th, 2019

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