Non-Familial Dysautonomia Disease Awareness Pamphlet

     Non-familial dysautonomia (sometimes called autonomic neuropathy) is a disease of the neurological system. It afflicts at least three million Americans, primarily women.  Basically the human body's central computer (the autonomic nervous system), which controls automatic bodily functions, is broken.  

     Although the causes of the disease are not understood, suspected disease triggers include "traumas" such as a virus or surgery.   

     A helpful fact, in making the correct diagnosis, is that approximately 50% of patients can name the exact date that they became ill.  

     Additionally, a major symptom of non-familial dysautonomia is unregulated low blood pressure (sometimes called orthostatic hypotension or intolerance).  As a result, people with the disorder often feel as if they are going to pass out upon standing.  This happens because there is insufficient blood supply to the brain.  

     Accordingly, due to poor blood pressure control (sometimes referred to as hypoperfusion), victims may experience severe headaches, fatigue, inability to stand, dizziness, feeling lightheaded, nausea, confusion, and a rapid heart beat.

     Non-familial dysautonomia is often misdiagnosed for long periods. This is the case in spite of the fact that the second leading cause of blood pressure control problems, after hypertension, is dysautonomia-caused orthostatic hypotension (low blood pressure upon standing).

 The following conditions are types of non-familial dysautonomia:

1.  Orthostatic Hypotension (OH).


2.  Orthostatic Intolerance (OI).


3.  Postural Orthostatic Tachycardia Syndrome also known as Postural Tachycardia Syndrome (POTS).


4.  Neurocardiogenic Syncope (NCS).


5.  Neurally Mediated Hypotension (NMH).


6.  Vasovagal Syncope (VVS).  

     There is authoritative literature to help physicians correctly diagnosis this disease. Most is available via the Medline database, accessible for free via most public libraries.  You can also browse the links on the ADI website (www.adiwebsite.org).   

     As to this literature and increasing awareness of the existence of non-familial dysautonomia, the National Institutes of Health suggests that prompt and correct diagnosis would save hundreds of millions of dollars (per year) in wasted medical expenses. However, the disease cannot be diagnosed if medical professionals have not heard of it or are not aware of the correct diagnostic tools. 

     This information sheet is a service of the nonprofit American Dysautonomia Institute. It can be reproduced and distributed without charge.                             

                               American Dysautonomia Institute

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