Frequently Asked Questions (FAQ) | Dysautonomia Advocacy Foundation

WHAT ARE DYSAUTONOMIAS OR AUTONOMIC DISORDERS?

Dysautonomia – or autonomic dysfunction – describes a range of disorders that cause the autonomic nervous system to not function properly. Dysautonomia can be present at birth or develop later in life due to genetics or trauma. Estimates suggest tens of millions of people worldwide are affected by some form of dysautonomia.

WHAT IS THE AUTONOMIC NERVOUS SYSTEM?

The autonomic nervous system is responsible for constantly regulating the “automatic” body functions that you don’t usually have to think about. These include heart beat, blood pressure, digestion and regulating body temperature – to name just a few.

WHAT ARE THE MOST COMMON TYPES OF DYSAUTONOMIA?

Neurocardiogenic Syncope is one of the most common forms of dysautonomia. With this condition, the autonomic nervous system doesn’t regulate the flow of blood throughout the body in response to changes in gravity. For example, a person with neurocardiogenic syncope may feel dizzy or pass out while standing because blood is not reaching the brain effectively.

Postural Orthostatic Tachycardia Syndrome (or “POTS”) affects both the heart and blood pressure. Someone with POTS can experience an increase of 30 beats per minute or more within ten minutes of standing, without their blood pressure decreasing. POTS may occur as the result of an autoimmune disorder, after an infection or trauma, or there may be no identifiable cause for the condition.

Orthostatic Hypotension and Chronic Orthostatic Intolerance describe a sudden drop in blood pressure upon standing and the inability to stand for prolonged periods of time, respectively. They are both associated with dysautonomia, but are not diagnoses of autonomic disorders. These conditions are symptoms of dysautonomias, and doctors must conduct tests to identify the underlying causes of each.

HOW DOES DAF HELP THOSE WITH DYSAUTONOMIAS?

Dysautonomia Advocacy Foundation is a 501 (C) (3) nonprofit working to improve the quality of life for patients and their families through integrated clinical practice, education and research. Team DAF aids in funding programs geared toward educating the medical community about the signs and symptoms of dysautonomias, so that the time from symptoms to diagnosis and treatment decreases from an average of 5 years.

Team DAF also works with other foundations to help further educate patients about the early signs of autonomic dysfunction and supplies credible resources on autonomic disorders for patients to bring to their primary care physician. Team DAF believes that working with other foundations as a TEAM, will inspire hope to those who need it, raise awareness and educate the medical community at large about all forms of dysautonomia.

WHY IS IT IMPORTANT TO SUPPORT DYSAUTONOMIA RESEARCH AND EDUCATION?

By furthering research, increasing education and empowering patients to be advocates for their health, Team DAF helps lessen the suffering of those whose lives have been forever impacted by dysautonomias and speed their way to more effective treatments. Even though dysautonomias affect millions of people, they are not widely understood by medical professionals.

Symptoms of autonomic disorders/dysautonomias are as varied as those they affect, and there is no single diagnostic test that can be used to pinpoint the causes of symptoms. The most effective means of diagnosing a patient with this syndrome is taking a thorough patient history, which is difficult and often impossible in many medical environments due to time constraints and lack of training.

On average, diagnosing a patient with dysautonomia may take up to 5 years. Unless a family member or the patient themselves are already well versed on dysautonomias, do they learn that there is not a dedicated treatment or cure available – just the management of the myriad symptoms for the variety of sub-types of this syndrome.

Medical costs are staggering because most treatments or procedures are deemed “off-label,” leaving the doctor and patient frustrated and paying out-of-pocket because the insurance companies will not cover the costs.

Furthermore, patients and caregivers find that dysautonomias vary in severity, develop in otherwise healthy, young adults, and seem to affect more women than men. Many families have to learn to cope with a debilitating disorder, that in some cases in a rare subgroup of autonomic disorders and be possibly fatal.

For some, autonomic disorders can be chronic, while in others, they may lie dormant until a stressor, like an illness, trauma or pregnancy, may ignite the syndrome with a wide variation of severity.

Research and education are our most powerful tools in helping those who are already afflicted with dysautonomia, and reducing the time to diagnosis and treatment for future patients.