Join Our Living with Sleep Disorders Community
Living with Sleep Disorders is an online support community by BensFriends.org, dedicated to rare disease patient networks. Our mission is to offer a safe, supportive space for patients, caregivers, and loved ones affected by rare diseases or chronic illnesses.
Sleep disorders encompass a range of conditions that disrupt the normal pattern of sleep. These disorders can have a significant impact on an individual’s overall health, safety, and quality of life. Sleep deprivation resulting from these disorders can impair driving ability and increase the risk of various health problems.
Recognizing sleep disorder signs is crucial. Common indicators include daytime sleepiness, irregular breathing, movement, sleep-wake cycles, and difficulty sleeping.
Sleep disorders are categorized based on the underlying causes or their effects on sleep. They can be grouped according to behavioral patterns, disruptions in natural sleep-wake cycles, breathing difficulties during sleep, difficulty initiating or maintaining sleep, or excessive daytime sleepiness.
Common sleep disorders include insomnia, sleep apnea, restless legs syndrome (RLS), and narcolepsy. Insomnia refers to difficulty falling asleep or staying asleep. Sleep apnea is characterized by abnormal breathing patterns during sleep, including obstructive, central, and complex types. Restless legs syndrome (RLS), also known as Willis-Ekbom disease, causes discomfort and an urge to move the legs when trying to sleep. Narcolepsy is a neurological condition characterized by excessive daytime sleepiness and sudden daytime sleep episodes.
Sleep disorders are diagnosed through various methods and treated with lifestyle changes, medication, therapy, or combinations.
Overall, recognizing the signs, seeking medical evaluation, and receiving appropriate treatment are crucial for managing sleep disorders and improving overall sleep quality and well-being.
Connect with others. Visit our Living with Sleep Disorders Patient Community.
LivingWithSleepDisorders.org is a safe peer-to-peer community for patients (12+) and families to share support, information, and experiences.
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 to Living with Sleep Disorders Community?
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
- Looking For Your Sleep Disorders Stories!by modsupport on January 11, 2024
@trust_level_0 Dear Sleep Disorders Support Member, For over 10 years, the Ben’s Friends online rare patient communities, run & moderated by rare patients themselves, have been a source of support for many of us, living with rare diseases. But it’s not enough. We would like more people to know about this wonderful service. To that effect, we are planning a social media campaign that will […]
- Some of the Rare Sleep Disordersby ben on July 17, 2023
As written by Sascha Gallardo Ben’s Friends Blog You might have had some problems falling or staying asleep especially on nights when you have a lot on your mind. In fact, it is estimated that there are around 70 million people in the US that have chronic sleep disorders, according to the Centers for Disease Control and Prevention. [1] But while many people are familiar with problems related […]
- Narcolepsy Is Beyond Sleepiness. How Does it Affect a Patient’s Life?by ben on July 17, 2023
As written by Sascha Gallardo Ben’s Friends Blog Narcolepsy, often thought to be a sleep disorder, is in fact a pervasive neurologic disorder with a genetic origin that causes an autoimmune response affecting every body system and facet of life. It is a rare long-term disorder wherein the brain is unable to regulate the sleep cycle and causes excessive sleepiness during the day. Some patients […]
- 7 Things to Look for When Choosing a Doctorby ben on May 4, 2023
Sascha Gallardo – November 1, 2022 When you are experiencing symptoms and know that something is wrong, do you settle with the first doctor you meet? Like many other patients, do you also think that doctors know everything so you should believe and simply follow everything they say? At Ben’s Friends, one of the things we always encourage our members to do is to advocate for their own […]
- Spotlight on Our Moderatorsby ben on March 30, 2023
Ben Munoz – October 31, 2019 When we recently asked our moderators what they love about their role, we got a variety of reactions. Not surprising: each of our “mods” does their job in their own way! Some are very active in the conversation, and others take a more hands-off approach, intervening only when there might be a problem. We think that’s one of the ways our forty-some community […]
