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.
- Sascha Gallardo – June 4, 2020 Providing a safe and supportive community for patients is our top priority at Ben’s Friends. We want members to freely ask questions, share opinions, and express emotions without having to worry about inappropriate reactions from others. And this has always been possible because of members who voluntarily devote time to ensure that this goal is always met. We have two types of moderators at Ben’s Friends. We have community moderators who are oftentimes in charge of a single community, usually the one they […]
- Sascha Gallardo – June 15, 2020 The patients who visit our sites have tons of questions on their mind related to their symptoms, which clinic to visit, the medications they are taking, and the treatment procedures they will undergo. They want a space to find answers as well as comfort from people who truly care. The Ben’s Friends team, on the other hand, interacts with the members on a daily basis. Everyone has to be equipped with certain skills to become effective at the tasks at hand. For instance, […]
- Sascha Gallardo – July 1, 2020 We’re excited to announce that Ben’s Friends has partnered with ClozTalk, a social impact company that helps charities raise people’s awareness of their mission. ClozTalk now designs apparel like t-shirts, hoodies, and jackets with the logo of Ben’s Friends. As more people get to know our organization through the sale of these items, we can reach more potential members and supporters of our cause. Not only is ClozTalk doing this at no charge to Ben’s Friends, they will also donate a percentage of […]
- Sascha Gallardo – August 31, 2020 Delays in getting an accurate diagnosis for a rare disease is very common. Patients would visit a physician, present their symptoms, and then they would be told there is nothing wrong with them. They’d visit another one, would be referred to a specialist, and then get some tests done only to go back to square one after a few months. The same process would be repeated until eventually, years have already gone by and they still don’t know exactly what it is they […]
- Sascha Gallardo – September 29, 2020 Ben’s Friends co-founder and chairman, Ben Munoz, was interviewed recently for the Rare Leader, a regular feature of the Global Genes’ Rare Daily website. In the Q&A piece, Ben shares how the organization started, its mandate and strategy, new projects and management philosophy. Ben underscores how important focus is in keeping the organization relevant. “The best way to keep the organization relevant is focus. Ignore the non-essentials. Don’t focus so much on what others are doing because that’s sometimes a distraction. Focus on […]