American Dysautonomia Institute (ADI)
American Dysautonomia Institute Pamphlet
Dysautonomia (sometimes called autonomic neuropathy) is a disease of the neurological system. According to Mayo Clinic, it afflicts over three million Americans, 80% women and girls. Basically the human body's central computer (the autonomic nervous system), which controls automatic body functions, malfunctions. Major forms of dysautonomia are Postural Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), Orthostatic Intolerance (OI), Multiple System Atrophy (MSA), and Pure Autonomic Failure (PAF).
Major symptoms of dysautonomia include improperly regulated blood pressure, rapid heart rate, severe headaches, fatigue, dizziness, light-headedness, nausea, insomnia, exercise intolerance, shortness of breath, and confusion. Patients may also have debilitating pain in various parts of their body. One of the most disabling factors in dysautonomia is that people either faint or feel as if they are going to pass out. This can happen with no warning.
Many other health conditions are associated, without a full understanding of why, with dysautonomia. These include irritable bowel syndrome, hormone problems, and autoimmune conditions. For example, physicians have recently tied together Interstitial Cystitis (which affects the bladder) with dysautonomia. People with Interstitial Cystitis (IC) generally experience intense pelvic pain, along with frequency and urgency of urination, especially upon lying down.
Because the ANS regulates all of the unconscious bodily functions, including cardiovascular, endocrine, urinary, and gastrointestinal, patients experience symptoms all over their bodies. They go from one specialist to another trying to figure out what is wrong with them. As a result, it generally take years to get a correct diagnosis, often only after seeing many doctors. This is 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).
One huge problem, pointed out by doctors at the Mayo Clinic, is that at least 25% of patients, diagnosed with chronic fatigue syndrome actually have dysautonomia.
Recently doctors at both Vanderbilt and Mayo Clinic have found different autoantibodies leading to the suspicion that some forms of dysautonomia are autoimmune. Many exciting research projects are pending.
The American Dysautonomia Institute's (ADI) main focus is to increase disease awareness and fund research. Although the causes of the disease are not completely understood, 50% of people with dysautonomia can name the exact date they became ill. The sickness often starts with some trauma to the body, including surgery, a virus (such as mononucleosis), or car accident.
Please help us to improve treatment options for the millions of people who have dysautonomia. Your contributions will be used 100% for research or increasing disease awareness (to reduce long periods of misdiagnosis).
This information sheet is a service of the nonprofit American Dysautonomia Institute. It can be reproduced and distributed without charge. It is not a substitute for expert medical care.
American Dysautonomia Institute
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Disclaimer: If you have any health problem you should seek the assistance of a qualified medical professional. Our efforts, to raise funding for research and to increase dysautonomia awareness, are not a substitute for capable medical care. At the same time information cited, about problems with accurate diagnosis, is correctly summarized.
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