HOW COMMON IS IT?
Dysautonomia is not rare.
More than 70 million people worldwide live with various forms of dysautonomia.
WHO IS AT RISK?
People of any age, gender or race can be impacted.
DOES MY DOCTOR KNOW ABOUT IT?
Probably not. Despite the high prevalence of dysautonomia, most patients take years to get diagnosed due to a lack of awareness amongst the public and within the medical profession.
IS IT ISOLATED?
Dysautonomia can also occur secondary to other medical conditions, such as diabetes, multiple sclerosis, rheumatoid arthritis, celiac, Sjogren’s syndrome, lupus, and Parkinson’s. Additionally, patients who experience dysautonomia may also suffer from Ehlers Danlos Syndrome (EDS).
IS THERE A CURE?
Although there is currently no cure for any form of dysautonomia, groups like Dysautonomia International are funding research to develop better treatments, and hopefully someday a cure. Additionally, some patients may see their symptoms improve over time.
CAN IT BE TREATED?
To help manage symptoms, patients are advised to do things like avoid sitting for long periods of time, treat contributing medical conditions and adopt a useful physical therapy routine. Additionally, it is often recommended to increase both fluid and salt intake in order to increase blood volume.*
Types of Dysautonomic Complications
Postural Orthostatic Tachycardia Syndrome (POTS)
POTS is estimated to impact 1 out of 100 teenagers and, including adult patients, a total of 1,000,000 to 3,000,000 Americans. The condition 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) or Vasovagal Syncope
NCS, also known as vasovagal syncope, is the most common form of dysautonomia, impacting 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. Learn more about dysautonomia from Dysautonomia International.
Ehlers Danlos Syndrome
The Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility. Learn more about Ehlers Danlos Syndrome from the Ehlers Danlos Society.
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*This has been shown to be particularly helpful in patients with blood pooling, hypovolemia, or hypotension. Most individuals with POTS and other forms of dysautonomia are advised by their physicians to consume 2-3 liters of hydrating fluids and 8-10 grams of salt per day. Check with your physician for your specific needs. For more severe cases, pharmacological treatments are also available. For an extensive overview of dysautonomia, its causes, symptoms and treatments, check out this guide from Dysuatonomia International.
1) Abed, Howraa, Patrick A. Ball, and Le-Xin Wang. “Diagnosis and Management of Postural Orthostatic Tachycardia Syndrome: A Brief Review.” Journal of Geriatric Cardiology 9 (2012): 61-67.
2) Grubb, Blair P. “Postural Tachycardia Syndrome.” Circulation: Journal of the American Heart Association 117 (2008): 2814-817