Welcome Members!

Welcome to Living with Narcolepsy Community!

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them.

This is an online support group for patients, friends and families affected by Narcolepsy. Narcolepsy is a chronic sleep disorder, or dyssomnia, characterized by excessive sleepiness and sleep attacks at inappropriate times, such as while at work. People with narcolepsy often experience disturbed nocturnal sleep and an abnormal daytime sleep pattern, which often is confused with insomnia. Narcoleptics, when falling asleep, generally experience the REM stage of sleep within 5 minutes; whereas most people do not experience REM sleep until an hour or so later.

Narcolepsy is neurological and not caused by mental illness or psychological problems. It is most likely affected by a number of genetic mutations and abnormalities that affect specific biologic factors in the brain, combined with an environmental trigger during the brain’s development, such as a virus.

National Institutes of Health (NIH) has additional information about Narcolepsy here.

LivingWithNarcolepsy.org is a virtual peer-to-peer community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.

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Why create an account?

Posts on the different Ben’s Friends communities can be read by anyone on the internet. You can browse through the different topics and find most of the information you’re looking for but there are many things you won’t be able to do unless you create an account. These include:

Making your own posts. Although you’re able to find useful information just by reading other members’ posts, you might still have a lot of questions in your mind. Either you want to start a new topic to talk about them in detail or you want to reply to a comment on a thread. These won’t be possible unless you create a new user account.

Viewing other members’ profiles. Member profiles include information about the country or region they are from, whether they are a patient or a caregiver, and details about their disease and treatments. Maybe you came across an interesting post and you want to learn more about the member. Or maybe you’re looking for members who are from the same country as you. Having a user account allows you to see other member profiles and find information that may be relevant.  

Sending private messages. Aside from being able to post publicly and commenting on a thread, having a user account also allows you to send private messages both to other members and moderators. In case you want to discuss a topic only with a specific person, this is possible by sending private messages when you have created your account.

Click here to create an account and join.

Latest Discussions

  • Ben’s Friends Lead Interns
    by BF_Writer on January 30, 2023

    Sascha Gallardo – February 1, 2021 Keeping Ben’s Friends communities safe and supportive would not be possible without the help of wonderful people who devote their time and skills to meet this objective. We have moderators who take care of […]

  • Nonprofit SnapCast features Ben Munoz
    by BF_Writer on January 26, 2023

    Sascha Gallardo – February 24, 2021 Nonprofit Snapcast, a podcast that tackles nonprofit management issues, recently featured Ben’s Friends president and co-founder, Ben Munoz. The interview focused specifically on how the organization is able […]

  • Two Disabled Dudes Podcast features Ben Munoz
    by BF_Writer on January 18, 2023

    Sascha Gallardo – March 30, 2021 In Two Disabled Dudes podcast episode number 138, Ben shared inspiring lessons he learned from having an AVM stroke, coping with the loneliness and fear during recovery, and making the most out of life. The […]

  • How Ben’s Friends moderators work as a team
    by BF_Writer on December 8, 2022

    Sascha Gallardo – September 29, 2021 Around 45,000 individuals make use of Ben’s Friends communities every month. People suffering from a rare disease are looking for information about how others like them cope. Many of them want to learn about […]

  • 4 tips on how to get the most out of your Ben’s Friends patient community
    by BF_Writer on December 7, 2022

    Sascha Gallardo – September 30, 2021 You probably have been checking a Ben’s Friends community site for a while. Maybe you have been feeling some symptoms and our site came out on your online search. Or maybe you have been diagnosed with the […]