What is 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.
Is there any 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.
What is the 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.
What research is being done?
The NINDS supports and conducts research on dysautonomia. This research aims to discover ways to diagnose, treat, and, ultimately, prevent these disorders.
Select this link to view a list of studies currently seeking patients.
National Dysautonomia Research Foundation
1407 West 4th Street
Suite 160
Red Wing, MN 55066-2108
ndrf@ndrf.org
http://www.ndrf.org
Tel: 651-267-0525
Fax: 651-267-0524
National Organization for Rare Disorders (NORD)
P.O. Box 1968
(55 Kenosia Avenue)
Danbury, CT 06813-1968
orphan@rarediseases.org
http://www.rarediseases.org
Tel: 203-744-0100 Voice Mail 800-999-NORD (6673)
Fax: 203-798-2291
Dysautonomia Foundation
633 Third Avenue
12th Floor
New York, NY 10017-6706
dys212@aol.com
http://www.familialdysautonomia.org
Tel: 212-949-6644
Fax: 212-682-7625
Familial Dysautonomia Hope, Inc. (FD Hope)
1457 O'Brian Drive
Newton, NC 28558
SPeltzer2@aol.com
http://www.fdvillage.org
Tel: 828-466-1678
Shy-Drager/Multiple System Atrophy Support Group, Inc.
2004 Howard Lane
Austin, TX 78728
Don.Summers@shy-drager.com
http://www.shy-drager.com
Tel: 866-SDS-4999 (737-4999)
Fax: 512-251-3315