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Patient support groups also offer information about clinical trials.
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NINDS Disorders is an index of neurological conditions provided by the National Institute of Neurological Disorders and Stroke. This valuable tool offers detailed descriptions, facts on treatment and prognosis, and patient organization contact information for over 500 identified neurological disorders.
Neurology Now
| Your Questions Answered: DYSAUTONOMIA. | 11.01.2007 |
Dysautonomia
Dysautonomia refers to a disorder of autonomic nervous system (ANS) function. Most physicians view dysautonomia in terms of failure of the sympathetic or parasympathetic components of the ANS, but dysautonomia involving excessive ANS activities also can occur. Dysautonomia can be local, as in reflex sympathetic dystrophy, or generalized, as in pure autonomic failure. It can be acute and reversible, as in Guillain-Barre syndrome, or chronic and progressive. Several common conditions such as diabetes and alcoholism can include dysautonomia. Dysautonomia also can occur as a primary condition or in association with degenerative neurological diseases such as Parkinson's disease. Other diseases with generalized, primary dysautonomia include multiple system atrophy and familial dysautonomia. Hallmarks of generalized dysautonomia due to sympathetic failure are impotence (in men) and a fall in blood pressure during standing (orthostatic hypotension). Excessive sympathetic activity can present as hypertension or a rapid pulse rate.
Treatment
There is no cure for dysautonomia. Secondary forms may improve with treatment of the underlying disease. In many cases treatment of primary dysautonomia is symptomatic and supportive. Measures to combat orthostatic hypotension include elevation of the head of the bed, frequent small meals, a high-salt diet, and drugs such as fludrocortisone, midodrine, and ephedrine.
Prognosis
The outlook for patients with dysautonomia depends on the particular diagnostic category. Patients with chronic, progressive, generalized dysautonomia in the setting of central nervous system degeneration have a generally poor long-term prognosis. Death can occur from pneumonia, acute respiratory failure, or sudden cardiopulmonary arrest in such patients.
Research
The NINDS supports and conducts research on dysautonomia. This research aims to discover ways to diagnose, treat, and, ultimately, prevent these disorders.
View a list of studies currently seeking patients.
View more studies on this condition.
Organizations
National Organization for Rare Disorders (NORD)
Federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. Committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
55 Kenosia Avenue
Danbury, CT 06810
Tel: 203-744-0100
Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
National Dysautonomia Research Foundation
Non-profit foundation established to help those afflicted with any of the various forms of dysautonomia. Provides a support network for affected individuals and family members by providing information on the various forms of dysautonomia, as well as providing contacts to other organizations that may be of assistance.
P.O. Box 301
Red Wing, MN 55066-0301
Tel: 651-267-0525
Fax: 651-267-0524
Dysautonomia Foundation
Non-profit organization that supports medical research grants and clinical care; provides information; and offers chapters nationwide and overseas.
315 W. 39th Street
Suite 701
Suite 701
New York, NY 10018
Tel: 212-279-1066
Fax: 212-279-2066
Familial Dysautonomia Hope Foundation, Inc. (FD Hope)
Non-profit organization that works to expand and accelerate research towards a cure for familial dysautonomia and to improve the lives of children and adults challenged by the disease. Funds research programs, provides a support network for patients and families, and promotes education and awareness in the medical community and public.
121 South Estes Drive
Suite 205-D
Suite 205-D
Chapel Hill, NC 27514-2868
Tel: 919-969-1414
Shy-Drager/Multiple System Atrophy Support Group, Inc.
National support group that collects and disseminates information and promotes education and support for people affected by Shy-Drager Syndrome or multiple system atrophy.
8311 Brier Creek Parkway
Suite 105-434
Suite 105-434
Raleigh, NC 27617
Tel: 1-866-737-5999
Dysautonomia Youth Network of America, Inc.
Nonprofit support and outreach network dedicated to serving youth diagnosed with various dysautonomia conditions. Provides peer and educational support, serves as a member forum for parents and youth, and sponsors a summer conference.
1301 Greengate Court
Waldorf, MD 20601
Tel: 301-705-6995
Fax: 301-638-DYNA