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.
- 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 health. Since many of our members deal with rare diseases, they often encounter medical practitioners who know very little about their […]
- Sascha Gallardo – January 20, 2020 Ben’s Friends created a user-friendly online training facility that makes learning about providing support to patients simple and easy. Dubbed as Ben’s Friends U or Ben’s Friends University, it makes use of Google Classroom to create one virtual classroom for Moderators and another one for the Interns. Using this G-suite tool, the Ben’s Friends team is able to build a “library” of links to learning materials such as documents, websites and video resources. Interaction between the teachers and students is also easy because […]
- Sascha Gallardo – March 7, 2020 Polyneuropathy is often characterised by numbness, tingling sensation, burning pain and even paralysis of the hands and feet which can later on progress to the other parts of the body such as the arms and legs. This condition can be either acute, which appears suddenly but resolves slowly, or chronic which progresses gradually. It has different classifications such as the Guillain-barré Syndrome (GBS), Chronic Inflammatory Demyelinating Polyneuropathy (CIDP), and Charcot-Marie-Tooth (CMT). Although these classifications have differences such as whether the condition was passed […]
- 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 […]