American Dysautonomia Institute Homepage
"Searching for a Cure"
Non-familial types of dysautonomia (forms of autonomic neuropathy) are diseases of the autonomic nervous system (ANS). The ANS is the part of the nervous system that controls all automatic bodily functions. Due to these disorders, the human body fails to properly regulate blood pressure, heart rate, temperature, vascular constriction/dilation, and blood supply to the brain. The results are unpredictable fainting, extremely low blood pressure, light-headedness, dizziness, problems concentrating (brain fog), headaches, fatigue, heart palpitations, exercise intolerance, insomnia, hot flashes, chills, weakness, seizures, pain, and disability. Yet the symptoms continue because dysautonomia affects all of the bodily systems including the digestive and urinary tracts and many more.
Dysautonomia affects the body's ability to handle gravity. When a person stands up, blood pools in the legs. Normally, the autonomic nervous system will compensate by constricting blood vessels and pushing the blood to the brain. However, often this does not occur in an individual with non-familial dysautonomia (NFD). As a result, the person becomes dizzy, light-headed, and may faint.
Just recently, doctors have tied together a specific urinary disorder called Interstitial Cystitis (which affects the bladder), with dysautonomia. People with Interstitial Cystitis (IC) generally experience intense pelvic pain, and urgency and frequency of urination especially upon laying down or sleeping. Often people have to sleep on the toilet because they are urinating every fifteen minutes. Not only do they always have the urge which clearly affects every part of their life (such as work, being in the car, etc.), but they are also in horrifying pain.
In addition, digestion is controlled by the autonomic nervous system (ANS). When the ANS malfunctions causing non-familial dysautonomia (NFD), the person challenged with the situation commonly develops gastrointestinal problems. Symptoms include nausea and abdominal pain.
While these are some of the more obvious symptoms of NFD, there are many more, as the autonomic nervous system affects all automatic functions of the body. Because NFD can cause blood supply problems in multiple organ systems, patients often go from specialist to specialist trying to figure out what is wrong and how their various symptoms are related.
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).
7. Many Cases of Chronic Fatigue Syndrome that have been Misdiagnosed.***
Orthostatic intolerance (dizziness and being lightheaded upon standing), is a cause of "significant disability in otherwise healthy women," according to Dr. David Robertson and other experts. Symptoms, say Dr. Robertson and his colleagues, "May include dizziness, visual changes, discomfort in the head or neck, poor concentration....anxiety, and in some cases fainting". See, Orthostatic Intolerance: A Disorder of Young Women, Obstetrical & Gynecological Survey. 55(4):251-259, April 2000.
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Many cases of NFD are triggered by viruses, including mononucleosis and the flu. Additionally, approximately 50% of patients can name the exact day they became sick. This can become an essential clue in diagnosis.
Research also suggests (but does not yet fully confirm) that many people, diagnosed with migraine headaches or irritable bowel syndrome, may have non-familial dysautonomia (NFD).
Non-familial dysautonomia (NFD) is presently incurable. It causes immeasurable pain, suffering, and financial hardship.
Still, most people with NFD seem to agree that the worst part of the condition is the lack of disease awareness and understanding from health care professionals. As a result, it typically takes several years to be correctly diagnosed. Even after this length of time many patients still are not accurately diagnosed.
As a result, the nonprofit American Dysautonomia Institute was established:
1. To promote awareness of the existence of the disease in order to foster more prompt diagnosis.
2. To hasten development of effective treatment of and a cure for non-familial dysautonomia.
3. To advocate for increased research funding for NFD.
4. To finance and/or administer grant funding to public and private non-familial dysautonomia research facilities.
5. To encourage the federal government to fund and implement the unanimous research recommendations of its own staff and the private hubs of NFD research.
Recommendations by the Experts
In the summer and fall of 2002 there was unanimous medical testimony, both before a Joint Congressional Dysautonomia Informational Hearing and related seminar in the District of Columbia. At these events, physicians from the New York Medical College (Center for Hypotension), Vanderbilt Medical Center, National Institutes of Health, Medical College of Ohio (now University of Toledo Medical Center), and Mayo Clinic stated that:
1. Dysautonomia is a disorder of the autonomic nervous system. As a result, the human body fails to automatically regulate the correct blood pressure, heart rate, and blood supply to all internal organs, causing suffering and disability.
2. Although frequently misdiagnosed, non-familial dysautonomia was then thought to affect over one million Americans, primarily women. There is no known cure or uniformly effective treatment. Moreover, by 2009, there was increasing consensus that over three million Americans have NFD. As to this statistic, the director of the National Institutes of Neurological Disorders and Stroke (one of the National Institutes of Health), has confirmed that millions of Americans suffer from forms of NFD.
3. Over one-half billion dollars, per year (in 2002 dollars), was thought to be wasted on medical care for non-familial dysautonomia victims. This was secondary to typical delay in diagnosis for one to two years after disease onset. However, given the fact that the number of people with NFD was originally underestimated (and is growing), the amount in wasted medical expense is probably closer to 1.5 billion dollars per year (in 2002 dollars).
4. Research funding for non-familial dysautonomia (NFD), to the National Institutes of Health, had been cut several times, although the economic stimulus package included an increase (amount unknown) in the budget. Research funding for private hubs of NFD care is insufficient.
5. Research funding is cost effective, in that it (and publicity generated by it) will help to cut down the number of people misdiagnosed. This would save Medicare, private health insurance carriers, Medicaid, and people with the disease many times the cost of the additional research.
6. Funding research for a condition that debilitates and tortures over three million Americans (most misdiagnosed), is politically and morally the correct action to take.**
7. By 2010 it was clear that 25% to 50% (or more) of people diagnosed with chronic fatigue syndrome actually had a form of NFD. As a result the number of Americans with NFD probably far exceeds three million.***
Similar conclusions (not yet covering chronic fatigue syndrome) came from a 2002 public dysautonomia symposium sponsored by the NationaI Institutes of Health itself. Accordingly, we quote the unanimous recommendations from the 2002 conference, summarized (at the request of the NIH) by Matt Cuajungco Ph.D.:
The first workshop on dysautonomia successfully concluded with all attendees agreeing on several issues: (i) that it is imperative to expand clinical and basic research and put emphasis on translational research; (ii) to endorse patient advocacy and improve awareness and education; (iii) to develop resources that will aid research and treatment strategies, and possibly establish collaborative broad scale efforts in the form of multi-project applications and grants and multi-site efforts; (iv) to encourage collaborative efforts and enhance data sharing and management; (v) and to hold regular, follow-up scientific meetings. [emphasis added]
These recommendations, except for terrific information exchange among researchers, were not significantly implemented for years. Our mission encompasses trying to effectuate the recommendations set forth in points i,ii, and iii.
In 2009-2010, of a more positive note, administrators (at the National Institutes of Health) have set in motion research plans which give renewed hope for treatment progress in the coming years.
The National Institutes of Health (NIH) needs the funds to implement its own recommen-dations, as to how to proceed with more effective non-familial dysautonomia re-search. After a series of previous budget cuts, in 2009-2010 the NIH appeared committed to implement effective strategies as to the fight to correctly diagnose, and be able to treat more effectively, dysautonomia.
To obtain additional authoritative information, regarding dysautonomia, please see our links page.
A division of National Institutes of Health, in Bethesda, Maryland, is the location of the chief federal government dysautonomia research center. Please see our links page for access to its dysautonomia website.
*The American Dysautonomia Institute (ADI) is a tax exempt organization pursuant to Sec. 501(c)(3) of the Internal Revenue Code. Contributions are deductible under Section 170 of the Code.
**Sources (in alphabetical order followed by journal cite): National Institutes of Health, Drs. Philip Fischer, David Goldstein, Blair Grubb, Philip Low, David Robertson, Julian Stewart, and independent ADI research. ***Johnson J, Mack, J, Kuntz N, et.al. postural orthostatic tachycardia syndrome: a clinical review. Pediatric Neurology 2010;42(2):77-85.
Please note that we are not physicians and therefore cannot respond to individual requests for physician referrals or medical information. Unfortunately, we do not have the staff to be a hotline for patient complaints. We are an organization that is trying to improve healthcare for NFD patients, so that there are no longer patient complaints. To reach this goal, we need your help in increasing disease awareness. Thank you!
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 non-familial dysautonomia awareness, are not a substitute for capable medical care. At the same time information cited, about problems with accurate diagnosis, is correctly summarized.
Last updated: March 18, 2013