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NINDS Hereditary Spastic Paraplegia Information Page

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Synonym(s):   Familial Spastic Paralysis

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What is Hereditary Spastic Paraplegia?

Hereditary spastic paraplegia (HSP), also called familial spastic paraparesis (FSP), refers to a group of inherited disorders that are characterized by progressive weakness and stiffness of the legs. Though the primary feature of HSP is severe, progressive, lower extremity spasticity, in more complicated forms it can be accompanied by other neurological symptoms. These include optic neuropathy, retinopathy (diseases of the retina), dementia, ataxia (lack of muscle control), icthyosis (a skin disorder resulting in dry, rough, scaly skin), mental retardation, peripheral neuropathy, and deafness. Diagnosis is primarily by neurological examination and testing to exclude other disorders. Specialized genetic testing and diagnosis are available at some medical centers.

Is there any treatment?

There are no specific treatments to prevent, slow, or reverse HSP. Symptomatic treatments used for other forms of chronic paraplegia are sometimes helpful. Regular physical therapy is important for improving muscle strength and preserving range of motion.

What is the prognosis?

The prognosis for individuals with HSP varies. Some cases are seriously disabling while others are less disabling and are compatible with a productive and full life. The majority of individuals with HSP have a normal life expectancy.

What research is being done?

The NINDS supports research on genetic disorders such as HSP. Genes that are responsible for several forms of HSP have already been identified, and many more will likely be identified in the future. Understanding how these genes cause HSP will lead to ways to prevent, treat, and cure HSP .

NIH Patient Recruitment for Hereditary Spastic Paraplegia Clinical Trials

Organizations

Spastic Paraplegia Foundation
Spastic Paraplegia Foundation PO Box 1208 Fortson, GA 31808 Phone: 877-773-4483 Email: information@sp-foundation.org www.sp-foundation.org
Suite 123
Falls Church, VA   22043
information@sp-foundation.org
http://www.sp-foundation.org
Tel: 1-877-SPF-GIVE (1-877-773-4483)
Fax: 877-SPF-GIVE

 Genetic Alliance
4301 Connecticut Avenue, N.W.
Suite 404
Washington, DC   20008-2369
info@geneticalliance.org
http://www.geneticalliance.org
Tel: 202-966-5557 800 336-GENE (4363)
Fax: 202-966-8553
National Ataxia Foundation (NAF)
2600 Fernbrook Lane North
Suite 119
Minneapolis, MN   55447-4752
naf@ataxia.org
http://www.ataxia.org
Tel: 763-553-0020
Fax: 763-553-0167

 WE MOVE (Worldwide Education & Awareness for Movement Disorders)
204 West 84th Street
New York, NY   10024
wemove@wemove.org
http://www.wemove.org
Tel: 212-875-8312
Fax: 212-875-8389
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

 Synapse: A PLS Newsletter
212 Farm Road
Sherborn, MA   01770
synapsePLS@comcast.net
http://www.synapsepls.org
Tel: 508-653-5246


Prepared by:
Office of Communications and Public Liaison
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Bethesda, MD 20892



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.

Last updated June 19, 2007