Your browser does not support javascript:   Search for gard hereSearch for news-and-events here.

Diseases

Genetic and Rare Diseases Information Center (GARD)

Print friendly version

Human T-cell leukemia virus type 1


Other Names for this Disease
  • HTLV-1
  • Human T lymphotropic virus type 1
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.


Your Question

Is there treatment or a cure for HAM/TSP or for HTLV-1 in general?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

What is HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP)?

HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP) is a chronic, progressive disease of the nervous system that affects less than 2 percent of people with HTLV-1 infection. Signs and symptoms vary but may include progressive weakness, stiff muscles, muscle spasms, backache, a 'weak' bladder, and constipation.[1][2] The HTLV-1 virus can be transmitted from mother to child via breastfeeding or childbirth, from person to person through sexual contact and through blood contact, either by transfusion or by reuse of injection equipment.[2][3][4] HTLV infection is not passed from person to person by coughing, sneezing, kissing, cuddling or daily social contact.[4] Screening of donated blood for HTLV-1 has been done in the United States since 1988.[3]
Last updated: 3/16/2011

What are the signs and symptoms of HTLV-1 associated myelopathy/tropical spastic paraparesis?

Signs and symptoms of HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP) vary but may include:[1][2]

  • Progressive weakness 
  • Stiff muscles 
  • Muscle spasms 
  • Backache
  • A 'weak' bladder 
  • Constipation

Rarely HAM/TSP may cause:[2]

  • Uveitis 
  • Arthritis
  • Inflammation of the lung 
  • Polymyositis 
  • Dry eyes (keratoconjunctivitis sicca) 
  • Skin inflammation (infectious dermatitis)
Last updated: 3/16/2011

How might HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP) be treated?

There is no established treatment program for HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP).  Corticosteroids may relieve some symptoms, but aren’t likely to change the course of the disorder.  Clinical studies suggest that interferon alpha provides benefits over short periods and some aspects of disease activity may be improved favorably using interferon beta. Stiff and spastic muscles may be treated with lioresal or tizanidine.  Urinary dysfunction may be treated with oxybutynin.[2]
Last updated: 3/16/2011

Is there research being conducted on possible treatment options for human T-cell lymphotrophic virus associated myelopathy/tropical spastic paraparesis (HAM/TSP)?

The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. Currently, three clinical trials are identified as enrolling individuals with HAM/TSP. To find these trials, click here. After you click on a study, review its "eligibility" criteria to determine its appropriateness. Use the study’s contact information to learn more. Check the ClinicalTrials.gov Web site often for regular updates.

If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials by clicking here.

A tutorial about clinical trials that can also help answer your questions can be found at the following link from the National Library of Medicine:
http://www.nlm.nih.gov/medlineplus/tutorials/clinicaltrials/htm/video.htm

Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases (ORD), part of the National Institutes of Health.
http://rarediseases.info.nih.gov/Resources.aspx?PageID=8
Last updated: 6/6/2011

How can I locate articles published on the treatment of HTLV-1 associated /tropical spastic paraparesis (HAM/TSP)?

You can find relevant journal articles on treatment of HTLV-1 associated myelopathy/tropical spastic paraparesis (HAM/TSP) through a service called PubMed, a searchable database of medical literature. Some articles are available as a complete document, while information on other studies is available as a summary abstract.  To obtain the full article, contact a medical/university library (or your local library for interlibrary loan), or order it online using the following link. Using "HTLV-1 associated myelopathy OR tropical spastic paraparesis AND treatment" as your search term should locate articles. To narrow your search, click on the “Limits” tab under the search box and specify your criteria for locating more relevant articles.  Click here to view a search.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=PubMed

The National Library of Medicine (NLM) Web site has a page for locating libraries in your area that can provide direct access to these journals (print or online). The Web page also describes how you can get these articles through interlibrary loan and Loansome Doc (an NLM document-ordering service). You can access this page at the following link http://nnlm.gov/members/. You can also contact the NLM toll-free at 888-346-3656 to locate libraries in your area.
Last updated: 6/6/2011

References