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  Tropical Spastic Paraparesis 
Synonym(s):  Retrovirus-Associated Myelopathy, HTLV-1 Associated Myelopathy
Reviewed  12-10-01  

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Table of Contents (click to jump to sections)

What is Tropical Spastic Paraparesis?
Is there any treatment?
What is the prognosis?
What research is being done?

Organizations
Related NINDS Publications and Information

What is Tropical Spastic Paraparesis?
For several decades the term “tropical spastic paraparesis” (TSP) was used to describe a chronic and progressive clinical syndrome that affected adults living in equatorial areas of the world. This condition was initially thought to be associated with infectious agents (such as Treponema pertenue and Treponema pallidum which cause inflammation of the central nervous system) and with chronic nutritional deficiencies (such as avitaminosis) or exposure to potentially toxic foods (such as bitter cassava). Neurological and modern neuroepidemiological studies found that in some individuals no one cause could explain the progressive weakness, sensory disturbance, and sphincter dysfunction that affected individuals with TSP. In spite of public health programs created to eradicate the above-mentioned infectious and nutritional conditions in the tropics, large numbers of people continued to be affected. During the mid-1980's, an important association was established between the first human retrovirus-human T-cell lymphotrophic virus type 1 (also known as HTLV-1)-and idiopathic TSP (idiopathic means of unknown origin). Since then, this condition has been named HTLV-1 associated myelopathy/ tropical spastic paraparesis or HAM/TSP and scientists now understand that it is a condition caused by a virus that results in immune dysfunction. Patients with HAM/TSP may also exhibit uveitis (inflammation of the uveal tract of the eye), arthritis (inflammation of one or more joints), pulmonary lymphocytic alveolitis (inflammation of the lung tissues), polymyositis (an inflammatory muscle disease), keratoconjunctivitis sicca (persistent dryness of the cornea and conjunctiva), and infectious dermatitis (inflammation of the skin). Co-factors that may play a role in transmitting the disorder include being a recipient of transfusion blood products (especially before 1989), breastmilk feeding from a seropositive mother, intravenous drug use, or being the sexual partner of a seropositive individual for several years. Not every HTLV-1 seropositive carrier will become a HAM/TSP patient. Fewer than 5% will exhibit neurological dysfunction or, eventually, hematological malignancy such as adult T-cell leukemia or lymphoma.

Is there any treatment?
There is no established treatment program for HAM/TSP although some patients may be given steroids. Clinical studies using interferon alpha and plasmapheresis have not shown significant patient improvement. Spasticity may be treated with lioresal or tizanidine. Urinary dysfunction should be treated with self-catheterization or oxybutynin. A current trial with interferon beta 1a is underway.

What is the prognosis?
HAM/TSP is usually a progressive neurological disorder but it is rarely fatal. Most patients live for several decades after the diagnosis. Their prognosis improves if they take steps to prevent urinary tract infection and skin sore formation, and if they enroll in physical and occupational therapy programs.

What research is being done?
The NINDS supports and conducts an extensive research program on disorders of the nervous system. The goals of this research are to find ways to prevent, treat, and, ultimately, cure these disorders

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

 Organizations

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

National Institute of Allergy and Infectious Diseases (NIAID)
National Institutes of Health
31 Center Drive, Rm. 7A50 MSC 2520
Bethesda, MD 20892-2520
(see website)
http://www.niaid.nih.gov
Tel: 301-496-5717

National Cancer Institute (NCI)
National Institutes of Health
Bldg. 31, Rm. 10A31
Bethesda, MD 20892-2580
cancermail@icicc.nci.nih.gov
http://cancernet.nci.nih.gov
Tel: 301-435-3848 NCI's Cancer Information Service 800-4-CANCER (422-6237) TTY: 800-332-8615

Related NINDS Publications and Information

Polymyositis 
Polymyositis information sheet compiled by NINDS, the National Institute of Neurological Disorders and Stroke.


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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