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.

 

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How is Ben’s Friends Different from Social Media and Other Support Sites?

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.

We’re interested in you as a person, and in your struggles as a rare disease patient.  But we don’t want to know your name or where you live. We won’t even allow you to use your real name when you register for one of our communities. Because when it comes to medical things, anonymity is important in our googly universe.  Your information is never shared, and your activity never tracked by adware.

When Ben’s Friends asks for the country and region you live in, that’s in case your fellow members can recommend local resources and help, and so everyone knows what kind of medical system there is where you live.  That’s important when it comes to giving and getting support. Because we are all about support, and we’re all in this together.. 

Ben’s Friends: Safe and Supportive.  And anonymous to keep it that way.

 

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.

 

  • What is narcolepsy and how can you help someone suffering from it?
    by BF_Writer on June 30, 2022 at 9:26 am

    Sascha Gallardo - July 8, 2021 Do you know of anyone who is always sleepy? And when I say sleepy, I mean excessive daytime sleepiness. It’s like they pull an all-nighter every single day. Maybe you have a friend or a relative who just dozes off all the time. For sure this person has always been a topic of conversation. He or she has always been thought of as rude, lazy, or irresponsible. But what if this person is actually suffering from a sleep disorder? Sleep disorder causing excessive daytime sleepiness Excessive daytime sleepiness can be due to a sleep disorder called narcolepsy, wherein the brain is unable to regulate one’s sleep cycle. While excessive daytime sleepiness is a predominant characteristic, other symptoms of narcolepsy may include: sleep paralysis or the inability to move when waking up or falling asleep hallucinations, usually since their dreams are quite vivid and seem to be real disrupted sleep or the tendency to awaken many times during the night, and cataplexy or the loss of muscle control, usually triggered by strong emotions like anger or laughter. How narcolepsy affects a person’s life Narcolepsy can have a huge impact on a person’s day-to-day life. Sleeping when in the middle of a lecture, for instance, makes a person miss out a lot in school, particularly when their teachers are not familiar with it. The same thing can happen at work. People suffering from narcolepsy might find it difficult to perform at their best. Their constant napping during work hours could easily cost them their job if their employers do not have a policy that’s supportive of conditions like narcolepsy. Aside from productivity and performance, safety is also another thing narcoleptics are concerned about. Dozing off while driving can definitely put themselves and other people at risk. They need to make sure they only drive when they can even if it means being late or missing an appointment. From time to time, they also need to look for a safe place to take a nap when needed. What can you do? People living with narcolepsy can definitely benefit from the support especially from people close to them. Here are some things you can do to help. Learn about narcolepsy. The most important thing perhaps is to learn about the condition. The more you know about the narcolepsy, the more you will understand why they are behaving a certain way or not doing certain things. You won’t need to ask them questions or give suggestions that can aggravate the stress they already feel. Be flexible. People with narcolepsy usually have to take naps during the day. If you are planning a social event, factor these naps in. You might want to hold it where there can be an ideal place for them to nap when needed. Be more understanding. Sometimes they just have to miss activities because they’re having sleep attacks. Be more understanding when things like these happen. Keep in mind that they don’t want to miss them either, but that’s just the nature of their condition. Help them with chores. There might also be instances when they cannot do some chores because of their condition. You can offer to help them babysit their kids, order lunch delivery, or take care of their pets when needed. Join supportive patient communities. Joining support groups like Ben’s Friends’ Living with Narcolepsy Community can provide you with a clearer picture of what your friend or loved one is going through. Aside from reading stories of people with narcolepsy, you can also post questions about all the things you want to understand. You might also want to encourage them to join the support group since getting in touch with people who go through the same things as they do can really have a huge difference in their lives. Not many people are familiar with narcolepsy or some of them are misinformed about its symptoms. Because of this, people living with this condition usually struggle with the way they are treated by others. Finding ways how you can be of help to a friend or a loved one who is suffering from this condition, can help make things so much better for them. —– Ben’s Friends is a network of safe and supportive online communities for individuals affected by a rare disease or chronic condition. Our Living with Narcolepsy Community aims to provide online support to people affected by narcolepsy. If you think you or someone you know would benefit from our community, we invite you to sign up here. 1 post - 1 participant Read full topic

  • Shop With AmazonSmile This Summer And Help Change Patients Lives
    by Bens_Friends on June 13, 2022 at 8:51 pm

    Father’s Day. Graduations. All Summer Needs. Do some “feel-good” shopping and change a rare disease patient’s life today. Go to smile.amazon.com Click “Get started” Once signed in, you will be prompted to pick a charity- Ben’s Friends AmazonSmile Foundation will donate 0.5% of the purchase price of most items. Thank you for being a friend. Ben 1 post - 1 participant Read full topic

  • Heads up! Happening soon
    by ModSupport on March 15, 2022 at 8:25 pm

    One day soon, you will point your browser (or your DiscourseHub mobile app) in the direction of LivingWithNarcolepsy.org and there you’ll be … in a completely different place! Well, not completely different: the page on which you’ll find yourself will be the new landing page for this community. From there, you will simply have to click on “Community” and you’ll be on the old familiar page again. So why are we doing this? Well, there are a few reasons: We want to give a first impression of a community that is dynamic and welcoming to newcomers, something that we’ve heard that the home page doesn’t always do. We’d like to attract more people to this community because our mission 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”. We hope to make this community more easily “findable” by the people who need it. To make it findable, we need a home page that Google and other search engines can zero in on and rank highly. (In the “biz”, that’s called “SEO”.) We hope you’ll like the new page when you see it. If you have any comments or suggestions, we’d love to hear from you. (For that matter, we always love hearing from our members!) Simply post below, or email us at modsupport@bensfriends.org. TJ and Seenie Copy to: @trust_level_0 1 post - 1 participant Read full topic

  • A Word about Covid Vaccines
    by Bens_Friends on January 3, 2022 at 9:56 pm

    "Whether or not you choose to get vaccinated is a personal choice. Somehow, someway choice has become a political statement. Ben’s Friends Communities are for peer to peer support, not politics. While Covid is a concern of our membership, we are not social media. Anytime discussion veers to politics, religion, or off topic, that discussion will be moderate either moved to a private discussion or locked. Governmental policy is not an element of peer support. Keep in mind we are an International Community. What is going on in one country politically means nothing to the rest of our membership. That being said, I want to share something from on of our FaceBook Groups which is very consistent with my previous background. From One Vaxxed Nurse: People are making this much harder than it needs to be. If I swabbed all the wounds I seein the ER, some of them would test positive for Clostridium Tetani, the bacteria that causes the disease called Tetanus. This bacteria exists in our environment so it’s going to get into wounds. Most people are vaccinated so they don’t develop Tetanus (the disease) If we swabbed the noses of everyone with a mild cough and looked for Bordetella Pertussis, we would get lots of positive hits, but most people are vaccinated against it and don’t develop Whooping Cough (The disease) Their vaccine worked, because they don’t have the severe disease associated with the infection. People who test positive for SARS-Cov-2 on nasal swab and little or no symptoms have been protected from COVID (the disease) The Vaccine worked. Its literally the SAMEas almost everything else we vaccinate for. MOST vaccines don’t give absolut protection from getting infected, they stop the severe disease associated with infection. MOST also require a periodic booster to maintain their levels of protection. None of this is new, you’re just now starting to pay attention." This is the first Epidemic/Pandemic in the Social Media Age so it all SEEMS new. On personal note, I’m old as dirt (according to multiple social media surveys) So I remember the Lynch Twins getting and dying from Whooping Cough when I was in the first grade and Moms keeping us all in the house for weeks till there wasn’t any more cough in the area. believe me the vaccine was welcomed. I remember not being able to run through the hose in the summer because we might get a chill. A chill was the start of Polio. The Raymond boy up the street had polio. They lined us up in school for our first Polio Shot and again several years later when the oral vaccine came out. I have a scar on my arm from Smallpox. We never thought about any of it, we were thankful. Its a personal choice, but please don’t overthink it and DON’T get your information for politicos, or social media “experts” 1 post - 1 participant Read full topic

  • Fwd: Holiday Help and Best Wishes
    by Bens_Friends on December 24, 2021 at 3:37 pm

    We know. It’s been another long, tiring, frustrating year. We hope you will have exactly the kind of holiday that you want and need. But we also know that the holiday season isn’t always the easiest time for our members. If you are feeling lonely, or you just need to touch base and talk, please remember that your Ben’s Friends community is there for you. Although your community may be very quiet, the Ben’s Friends team will do our best to make sure that you will be able to make contact with someone from Ben’s Friends right through this holiday season. Here’s what to do: First: go to your Ben’s Friends community and start a discussion about what’s on your mind. Get started by clicking on the + in the blue circle, lower right of the community page. Then, at the bottom of your post, key in @ModSupport . That will alert the people at ModSupport that you have posted. Before too long, you should hear from someone. If you are really desperate and can’t wait for a response, please go to your community and click on “Crisis Help Line”, where there are links to professional helping organizations. (These links work without logging into your community.) On behalf of Ben and everyone here at Ben’s Friends, best wishes to you and yours. Let’s hope for a warm and peaceful holiday, and many good things in the year to come. All the best Seenie and the ModSupport Team modsupport@bensfriends.org @trust_level_0 1 post - 1 participant Read full topic

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