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Narcolepsy Awareness: How To Get Involved

Written by Torrey Kim
Posted on March 1, 2022

If you’re living with narcolepsy, you’re already aware of the impact the condition can have on your life — but chances are strong that other people in your orbit don’t know as much as they could about the disease. That’s why it’s important to raise awareness for the condition — particularly during National Sleep Awareness Week from March 13 through March 19.

It can be hard when your friends and family don’t know what you’re going through. It can also feel difficult to say no to loved ones who don’t understand your situation. You might worry about how your relationships will be affected.

Raising awareness about narcolepsy is important so your friends, family, and acquaintances can better understand how to support you.

Start by Raising Your Own Awareness

Before you can create public awareness by sharing information with others, it’s a good idea to understand the specifics about narcolepsy. Learn more about narcolepsy’s causes, signs and symptoms, and treatments.

Narcolepsy is a neurological sleep disorder. In people with narcolepsy, the brain has trouble regulating the sleep cycle, resulting in disruptions of normal sleep and wakefulness patterns. The primary symptoms of narcolepsy are excessive daytime sleepiness and cataplexy — sudden, temporary loss of muscle tone. Narcolepsy is a chronic condition, meaning that it is usually lifelong, but it does not usually worsen with age. It may even improve over time. Narcolepsy is not contagious.

Share Awareness Resources

After you’re armed with information about narcolepsy, you can share it with others. The fastest and least expensive way for this kind of advocacy is through social media. You can post information about narcolepsy, share details about the condition, and join communities of other people who are also working to raise awareness about narcolepsy.

You can follow the American Sleep Association on Facebook, Twitter, and Instagram. To ensure your messages on social media reach as many people as possible, consider using an appropriate narcolepsy-related hashtag, like #narcolepsy, #SleepAwarenessWeek, or #NarcolepsyAwareness. This way, your posts will be seen by more people who have the same interests, and they’re more likely to share and comment.

Social media helps raise awareness for the condition, and it also allows other people with narcolepsy to realize they aren’t alone. Joining a narcolepsy community on social media, such as MyNarcolepsyTeam, can also help you connect with others.

Participate in Awareness Activities

Another way to raise awareness about narcolepsy is to participate in an activity dedicated to the cause. You can walk or run for narcolepsy, play bingo, host a silent auction or fundraiser, or even create a unique event that works for your interests. You can help other people understand more about narcolepsy while having fun and raising money for the cause.

If you’re able to, you can also donate to Wake Up Narcolepsy or another organization to support narcolepsy research and advocacy.

Connect With Others Who Understand

On MyNarcolepsyTeam, more than 8,000 people living with narcolepsy come together to ask questions, give advice, and share their stories with others who understand life with the condition.

Share your narcolepsy journey in the comments below, or start a conversation by posting on your Activities page.

Posted on March 1, 2022

A MyNarcolepsyTeam Member

Torrey, thanks for your article. This is the first that I have heard of "Wake up Narcolepsy" organization. I am always looking for more information on this disease which is rare, and with more… read more

posted June 20, 2023
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My Daughter Has Narcoleps, Just Finished A Degree In Phycology Where She Wants To Focus On Sleep. Where Can She Go To Get Experienc?
March 27, 2024 by A MyNarcolepsyTeam Member 1 answer
Torrey Kim is a freelance writer with MyHealthTeam. Learn more about her here.

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