NINDS Hallervorden-Spatz Disease Information Page

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NINDS Hallervorden-Spatz Disease Information Page
Synonym(s): Neurodegeneration with Brain Iron Accumulation
Reviewed 07-01-2001

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Table of Contents (click to jump to sections)

What is Hallervorden-Spatz Disease?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations

What is Hallervorden-Spatz Disease?
Hallervorden-Spatz disease, also called Neurodegeneration with Brain Iron Accumulation, is a rare, inherited, neurological movement disorder characterized by progressive degeneration of the nervous system. Symptoms, which vary greatly among patients and usually develop during childhood, may include slow writhing, distorting muscle contractions of the limbs, face, or trunk, choreoathetosis (involuntary, purposeless jerky muscle movements), muscle rigidity (uncontrolled tightness of the muscles), spasticity (sudden, involuntary muscle spasms), ataxia (inability to coordinate movements), confusion, disorientation, seizures, stupor, and dementia. Other less common symptoms may include painful muscle spasms, dysphasia (difficulty speaking), mental retardation, facial grimacing, dysarthria (poorly articulated speech), and visual impairment.

Is there any treatment?
There is no cure for Hallervorden-Spatz disease, nor is there a standard course of treatment. Treatment is symptomatic and supportive, and may include physical or occupational therapy, exercise physiology, and/or speech pathology.

What is the prognosis?
The prognosis for individuals with Hallervorden-Spatz disease is poor. The course of the disorder is relentlessly progressive. Death usually occurs approximately 10 years after onset. In a few cases, survival may extend for several decades.

What research is being done?
The NINDS supports research on neurodegenerative movement disorders such as Hallervorden-Spatz disease. The goals of this research are to increase understanding of these disorders, and to find ways to prevent, treat, and cure them.

Select this link to view a list of all studies currently seeking patients.

Organizations

NBIA Disorders Association
2082 Monaco Court
El Cajon, CA 92019-4235
info@NBIAdisorders.org
http://www.NBIAdisorders.org
Tel: 619-588-2315
Fax: 619-588-4093

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

Easter Seals
230 West Monroe Street
Suite 1800
Chicago, IL 60606-4802
info@easter-seals.org
http://www.easter-seals.org
Tel: 312-726-6200 800-221-6827
Fax: 312-726-1494

NINDS health-related material is provided for information purposes only and does not necessarily represent endorsement by or an official position of the National Institute of Neurological Disorders and Stroke or any other Federal agency. Advice on the treatment or care of an individual patient should be obtained through consultation with a physician who has examined that patient or is familiar with that patient's medical history.

All NINDS-prepared information is in the public domain and may be freely copied. Credit to the NINDS or the NIH is appreciated.

Provided by:
The National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892

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