What isLiving With Dysautonomia?
livingwithdysautonomia.org is a dedicated patient-to-patient support community for patients and families affected by Dysautonomia. livingwithdysautonomia.org is powered by BensFriends.org, a group of patient support communities for rare diseases, and is run by volunteer moderators who have been affected with Dysautonomia.
Who can join livingwithdysautonomia.org?
If you or your family has been affected by Dysautonomia, consider LivingwithDysautonomia.org your second home. LivingwithDysautonomia.org , as well as the rest of BensFriends.org’s patient communities, is free for members to join.
What is Dysautonomia?
Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the “automatic” functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation and constriction of the pupils of the eye, kidney function, and temperature control. People living with various forms of dysautonomia have trouble regulating these systems, which can result in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.
Dysautonomia is not rare. Over 70 million people worldwide live with various forms of dysautonomia. People of any age, gender or race can be impacted. There is no cure for any form of dysautonomia at this time. Despite the prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.
Some of the different forms of dysautonomia include:
Postural Orthostatic Tachycardia Syndrome (POTS) - estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,000,000 to 3,000,000 Americans. POTS can cause lightheadness, fainting, tachycardia, chest pains, shortness of breath, GI upset, shaking, exercise intolerance, temperature sensitivity and more. While POTS predominantly impacts young women who look healthy on the outside, researchers compare the disability seen in POTS to the disability seen in conditions like COPD and congestive heart failure.
Neurocardiogenic Syncope (NCS) - NCS is the most common form of dysautonomia, NCS impacts tens of millions of individuals worldwide. Many individuals with NCS have a mild case, with fainting spells once or twice in their lifetime. However, some individuals have severe NCS which results in fainting several times per day, which can lead to falls, broken bones and sometimes traumatic brain injury. Individuals with moderate to severe NCS have difficulty engaging in work, school and social activities due to the frequent fainting attacks.
Multiple System Atrophy (MSA) - MSA is a fatal form of dysautonomia that occurs in adult ages 40 and up. It is a neurodegenertive disorder with some similarities to Parkinson’s disease, but unlike Parkinson’s patients, MSA patients usually become fully bedridden within a 2 years of diagnosis and die within 5-10 years. MSA is considered a rare disease, with an estimated 350,000 patients worldwide.
Dysautonomia can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac, Sjogren’s syndrome, lupus, and Parkinson’s.
There is currently no cure for dysautonomia, but secondary forms may improve with treatment of the underlying disease. There are some treatments available to improve quality of life, both with medications and lifestyle changes/adaptations, but even using all treatments available, many dysautonomia patients experience disabling symptoms that significantly reduce their quality of life
What is BensFriends.org?
In 2007, Ben Muñoz suffered a rare form of stroke caused by an Arterio-Veinous Malformation (AVM). He was unable to find the support he needed during the most difficult time, so he created an online support community AVMSurvivors.org to connect with others like him. AVMSurvivors.org led to the founding of BensFriends.org, driven to provide patient-to-patient support communities for people living with rare diseases.
BensFriends.org is a network of patient communities for people living with rare diseases. Launched in November 2007, Bens Friends provides valuable patient support by creating and running compassionate, responsive communities. BensFriends.org maintains dozens of patient communities and has changed thousands of lives. Bens Friends is supported by donations from its principals and community.