Full disclosure – I recently joined Narcolepsy Network’s board of directors, and the thoughts expressed herein are my own (undoubtedly biased) opinions. If Narcolepsy Network has made an impact on your life, I’d like to invite you to share your story at https://narcolepsynetwork.typeform.com/to/FzdSdP
In October 2015, over the course of 3 jam-packed days, I was welcomed with open arms into a brand new family. This is a family unlike any I’ve ever known. It’s a large one, and I can only hope that it will grow even bigger in the years to come. There are more members of this family than I can ever hope to meet, though I do hope to meet you all some day. I met my new family in Minnesota, but we live all over the country. This family consists of an incredibly diverse group of people, from all walks of life. What makes this family unique is that we all share one special thing in common — we all have a rare sleep disorder called narcolepsy.
I met my new family at the Narcolepsy Network conference, an absolutely amazing annual gathering of people with narcolepsy, researchers, advocates, supporters, and friends. I am not being hyperbolic when I say that this conference was a life-changing event. I have never felt so connected to such a large group of people, so quickly, in my entire life. We talked, we listened to each other’s stories, we ate together, and we even put on silly hats together.
The Narcolepsy Network conference happens every year in October, and it is an opportunity to meet more people like yourself than you will likely ever be able to do in your normal, daily life. There are sessions on medications, new research, coping with symptoms, strategies for daily life, legal issues, disability information, and much more. There are even sessions for supporters (friends, spouses, relatives, and children of people with narcolepsy). Our staff and board of directors work diligently each year to bring a wide range of speakers to the conference.
The best part of the conference is the people who attend, and the many opportunities to connect with each other. At breakfast, between sessions, at dinner, and at the bar at the end of the day, you’ll have the chance to make new friends who share your experiences. This is my absolute favorite part of the conference — and I’ve made quite a few friends who I stay in touch with via social media.
So why join Narcolepsy Network? It’s the family you never knew you needed — and we’ll be there for you in October with open arms.
What is narcolepsy?
Let’s back up for a moment here, and address some questions that newly diagnosed PWN (that’s People With Narcolepsy, as we say in “the biz”) or folks without narcolepsy may have:
Narcolepsy is a rare sleep disorder that affects approximately 1 out of every 2,000 people. Out of those people, only about 25% are ever diagnosed. It is poorly understood by both the general public and within the medical community. Narcolepsy is considered a socioeconomic disorder, because it impacts the personal and professional lives of PWN.
Narcolepsy is characterized by a range of symptoms, which may vary greatly from person to person. The primary symptoms of narcolepsy include:
- Excessive daytime sleepiness — imagine pulling an all-nighter, this is what a person with narcolepsy feels like every day.
- Cataplexy — this is a sudden loss of muscle tone, usually triggered by emotions or stress. Cataplexy’s effects can range from a slight sagging of the jaw, to a full-body loss of muscle tone. About 70% of PWN experience cataplexy.
- Hypnagogic hallucinations — these are essentially dreams that occur before a person with narcolepsy has fallen asleep.
- Fragmented sleep — narcoleptics who experience this wake up very briefly, many times each night, often without realizing it.
- Sleep paralysis — the inability to move upon falling asleep and / or awakening.
Current research indicates that narcolepsy is an autoimmune disorder. There are two main types, as defined by Dr. Emmanuel Mignot’s team at Stanford:
- Type 1 — PWN who experience cataplexy. The cause has been identified as a loss of hypocretin cells in the hypothalamus region of the brain. These neurotransmitters regulate wakefulness.
- Type 2: PWN who do not experience cataplexy. The cause is currently unknown, and patients may not experience the loss of hypocretin.
How is narcolepsy treated?
Much like the range of symptoms that PWN experience, there is a wide range of treatments available. The drugs and strategies prescribed treat only the symptoms of narcolepsy, though there recently have been promising developments in drugs we hope will one day cure Type 1 narcolepsy. Common prescriptions include stimulants such as Ritalin, Adderall, Provigil, and Nuvigil, and other drugs such as Xyrem and antidepressants. Lifestyle adjustments including strict sleep routines, napping, exercise, etc can also be helpful.
What does Narcolepsy Network do?
We have a few key areas of focus: resources for PWN, programs for members (like our new Youth Ambassador program — which teaches kids to educate their local community / schools about narcolepsy), and advocacy for the entire narcolepsy community. We also hold an annual walkathon in New York. The annual conference is our biggest event by far. We have a closed support group on Facebook (that means you can find it, but only members can view discussions / participate), and recently launched a program to aggregate all of the narcolepsy support groups in an online map using Meetup.com
Narcolepsy Network also collaborates with organizations such as Global Genes and the National Organization for Rare Diseases. We send our executive director to Washington to meet with senators and congresspeople who are sponsoring legislation that will help people with narcolepsy. Our board members travel to state events, and volunteer their time in many different capacities — all with the goals of advancing narcolepsy awareness, and helping members of our family.
Since awareness is so low (even within the medical community), it often falls on you, as a person with narcolepsy, to advocate for yourself. Narcolepsy Network’s goal is to inform, educate, and empower you to feel confident doing this. One of the amazing things about the conference is the amount of high-quality information you’ll be exposed to. If you’re new to all of this, it may feel like a lot, but knowledge is half the battle when you go back to your primary care doctor, when you’re working with your insurance company, or when you are advocating for yourself at work or school.
How did this happen to me?
We’re all dealt a random hand of cards at birth — many will help us, some may create obstacles, and on the rare occasion, some will prove devastating. We have absolutely no say in any of this – there is no chance to sway the dealer; no negotiation to be had.
Sometimes a series of cards will line up in precisely the right order, at precisely the right moment, and completely change your life forever. If this has happened to you — if you have been “lucky” enough to join the rarified ranks of people with narcolepsy—know that the deck was always stacked against you, and there was nothing you could have done to influence it.
You didn’t even realize you were playing cards.
What can I do now?
The most important thing that you, as a person with narcolepsy, can do, is to find another person with narcolepsy, and do your best to support them with whatever they need.
You can look for a local support group. You can scour social media to find PWN near you. You can talk to sleep doctors to see if they have patients with narcolepsy. I recommend you do all of these things! And you can join the largest, most empathetic community of people with narcolepsy you will ever find, at Narcolepsy Network.
Family is the most important thing in many people’s lives, for obvious reasons. We all need a safe place to be ourselves. We all desire to be taken seriously. We all crave to be understood. These needs apply to all people, but are especially important to people with narcolepsy.
Why are they so important, you may ask? Here is the cold, hard truth: sometimes our real families refuse to accept our condition. Sometimes, they dismiss it as fiction. Just take a nap, they might say. Just go to bed earlier.
Your coworkers, your boss, even your friends. What’s wrong with you? they might ask. Why are you even here?
I’ve heard enough of these stories to know this much is true: we, as people with narcolepsy, have to be there for each other when no one else will. If we can’t help each other, then no one can. Family is the most powerful bond there is, and so I invite you to join the Narcolepsy Network family — we’re here with open arms.
Share your story
If Narcolepsy Network has made an impact on your life, I’d like to invite you to share your story at https://narcolepsynetwork.typeform.com/to/FzdSdP