Welcome to Living with Dysautonomia Community!
Living With Dysautonomia is a dedicated patient-to-patient support community for families affected by Dysautonomia. Living With Dysautonomia patients community is powered by BensFriends.org, a patient support communities for rare diseases, and is run by volunteer moderators who have been affected with Dysautonomia disorder.
If your family has been affected by Dysautonomia, consider Living With Dysautonomia your second home. Living With Dysautonomia, as well as the rest of BensFriends.org’s patient communities, is free for members to join.
What is Dysautonomia?
Fast facts about Dysautonomia
- There are around 15 types of dysautonomia.
- Primary dysautonomia is usually inherited or due to a degenerative disease, while secondary dysautonomias result from another condition or injury.
- The most common types are neurocardiogenic syncope, which leads to fainting. It affects millions of people globally.
- There is no single treatment that addresses all dysautonomias.
There are at least 15 different types of dysautonomia. The most common are neurocardiogenic syncope and postural orthostatic tachycardia syndrome (POTS).
Neurocardiogenic syncope (NCS), also known as Vasovagal Syncope, is one of the most common forms of dysautonomia. It affects tens of millions of people worldwide. The main symptom is fainting, also called syncope. This can occur on occasion only, or it may be frequent enough to disrupt a person’s daily life.
Gravity naturally pulls the blood downward, but a healthy ANS adjusts the heartbeat and muscle tightness to prevent blood pooling in the legs and feet, and to ensure blood flow to the brain.
NCS involves a failure in the mechanisms that control this. Temporary loss of blood circulation in the brain causes fainting.
Most treatments aim to reduce symptoms.
For people who faint only occasionally, avoiding certain triggers can help.
- alcohol consumption
- very warm environments
- tight clothing
Medication such as beta-blockers and pacemakers may be used to treat persistent or severe cases of NCS.
Postural orthostatic tachycardia syndrome
Postural orthostatic tachycardia syndrome (POTS) affects between 1 and 3 million people in the United States (U.S.). Around 80 percent of them are female. It often affects people with an autoimmune condition.
Symptoms can include:
- lightheadedness and fainting
- tachycardia, or abnormally fast heart rate
- chest pains
- shortness of breath
- stomach upset
- becoming easily exhausted by exercise
- over-sensitivity to temperatures
POTS is normally a secondary dysautonomia. Researchers have found high levels of auto-immune markers in people with the condition, and patients with POTS are also more likely than the general population to have an autoimmune disorder, such as multiple sclerosis (MS), as well.
Apart from auto-immune factors, conditions that have been linked to POTS or POTS-like symptoms include:
- some genetic disorders or abnormalities
- Ehlers-Danlos Syndrome, a collagen protein disorder than can lead to joint hypermobility and “stretchy” veins
- infections such as Epstein-Barr virus, Lyme disease, extra-pulmonary mycoplasma pneumonia, and hepatitis C
- toxicity from alcoholism, chemotherapy, and heavy metal poisoning
- trauma, pregnancy, or surgery
- Research into the causes of POTS is ongoing. Some scientists believe it might be due to a genetic mutation, while others think it is an autoimmune disorder.
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.
- 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 network is special. Each community reflects the needs of members and the personality of its moderators. How good is that? […]
- Ben Munoz – November 1, 2019 I remember talking, not so long ago, with one of our AVM veterans. He has been battling this disease for 41 years now. When it was first discovered no one within 500 miles knew what it even was, let alone how to treat it. He says that it was a very scary time. Not only because of major surgery as an 8th grader but also because that is what I call, “rather rare.” Imagine, if you will, that 8th grader, well into the […]
- Clasina Field – November 1, 2019 You must be wondering what Seenie has been doing these days. Well, I’ve been building our Google Classrooms and library where our Moderators and Interns will be able to learn the skills and tricks of the Moderator Trade. Right now, I’m about to stock our library with reading material and things like Slide Guides. It will all be set up for independent learning, at your convenience. Of course, there are no grades and certainly no report cards. But there are things like questions […]
- Sascha Gallardo – January 14, 2020 Members of Ben’s Friends patient communities can soon take advantage of a state-of-the-art technology that will enable them to manage their medical information in a secure multilingual digital tool, give them access to an online referral service for physicians and clinics, and let them participate in research that will benefit the rare disease community. Ben’s Friends is partnering with Backpack Health to provide a custom data management app to its patient-members and their caregivers. Initially targeting the Psoriatic Arthritis and Lyme Disease communities, […]
- Clasina Field – May 21, 2020 Helping others is good for your body as well as your mind. That’s what the article The Science of Helping Out said, anyway. And when the scientists measured the various benefits, they concluded that the giver gains at least as much as the receiver does. Everyone wins when we help each other. How great is that? So, as Tara Parker-Pope explained, “[t]o help yourself, start by helping others”. But wait. In this time of social distancing and isolation, how can you reach out […]