Spastic paraplegia 11
- Autosomal recessive spastic paraplegia type 11
- Hereditary spastic paraplegia 11
- Hereditary spastic paraplegia mental impairment and thin corpus callosum
- Nakamura Osame syndrome
- Nakamura-Osame syndrome
Your QuestionWhat is this exactly and how does it effect someone?
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Questions on this page
Spasticity (progressive muscle stiffness)
Paraplegia (eventual paralysis of the lower limbs)
Numbness, tingling, or pain in the arms and legs
Disturbance in the nerves used for muscle movement
Exaggerated reflexes of the lower limbs
Reduced bladder control
Less common features, include:
Age at time of symptom onset varies from infancy to early adulthood, with onset in infancy to adolescence being most common. Learning disability may begin in childhood. Most people experience a decline in intellectual ability and an increase in muscle weakness and nerve abnormalities over time. As the condition progresses, some people require wheelchair assistance (often 10 to 20 years after symptom onset).
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. You can find clinical trials for individuals with spastic paraplegias at the following link. After you click on a study, review its "eligibility" criteria to determine its appropriateness. Use the study’s contact information to learn more. Check this site often for regular updates.
You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling the toll-free number listed below to speak with a specialist, who can help you find trials of interest.
Patient Recruitment and Public Liaison Office
NIH Clinical Center
Bethesda, Maryland 20892-2655
Web site: http://clinicalcenter.nih.gov/
If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at the ClinicalTrials.gov Web page. 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 Research (ORDR), part of the National Institutes of Health.
You can also learn more about current research from the Spastic Paraplegia Foundation.
Spastic Paraplegia Foundation
4 Sherwood Hill Road
Sherman, CT 06784-2001
Web site: http://www.sp-foundation.org
Genetics clinics are a source of information for individuals and families regarding genetic conditions, treatment, inheritance, and genetic risks to other family members. More information about genetic consultations is available from Genetics Home Reference. To find a genetics clinic, we recommend that you contact your primary healthcare provider for a referral.
The following online resources can help you find a genetics professional in your community:
- The National Society for Genetic Counselors provides a searchable directory of US and international genetic counseling services.
- The American College of Medical Genetics has a searchable database of US genetics clinics.
- The University of Kansas Medical Center provides a list of US and international genetic centers, clinics, and departments.
- The American Society of Human Genetics maintains a database of its members, which includes individuals who live outside of the United States. Visit the link to obtain a list of the geneticists in your country, some of whom may be researchers that do not provide medical care.
- Spastic paraplegia 11, autosomal recessive SPG11. Online Mendelian Inheritance in Man. 2010; http://www.ncbi.nlm.nih.gov/entrez/dispomim.cgi?id=604360. Accessed 4/16/2010.
- Spastic paraplegia type 11. Genetics Home Reference. 2009; http://www.ghr.nlm.nih.gov/condition=spasticparaplegiatype11. Accessed 4/21/2010.
- Fink JK. A Comparison of Hereditary Spastic Paraparesis (HSP) and Primary Lateral Sclerosis (PLS). Spastic Paraplegia Foundation, Inc.. November 22, 2013; http://sp-foundation.org/understanding-hsp-pls/overview-summary-chart/. Accessed 10/22/2014.
- Stevanin G, Durr A, Brice A. Spastic paraplegia type 11. GeneReviews. 2009; http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=spg11. Accessed 4/21/2010.