Hereditary spastic paraplegia
Other Names for this Disease
- Familial spastic paraparesis
Your QuestionMy mother has spastic paraplegia. She was diagnosed about five years ago at the Mayo Clinic. She has the complicated form of the disorder because she is confined to a wheelchair and her mind has slowed down. Also, her brother also had this disorder. I know that I have a 50% chance of inheriting this disorder. Since my family members' cases are so severe, does this mean mine probably would be as well? Also, what research is being done to work towards a cure for this?
We have identified the following information that we hope you find helpful. If you still have questions, please contact us.
Questions on this page
- What is hereditary spastic paraplegia?
- How is hereditary spastic paraplegia (HSP) inherited?
- My family history of hereditary spastic paraplegia (HSP) includes my mother and her brother. Is there a 50% chance that I will also be affected?
- What is autosomal recessive inheritance?
- What is autosomal dominant inheritance?
- How can I learn more about research for hereditary spastic paraplegias?
- Since my family members' cases of hereditary spastic paraplegia (HSP) are severe, does this mean I could also have severe HSP?
- How can I find a genetics professional in my area?
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 of 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.
- Fink. HSP and PLS Overview Chart. Spastic Paraplegia Foundation (SPF) Web site. 2008; http://sp-foundation.org/understanding-hsp-pls/overview-summary-chart/. Accessed 1/31/2013.
- Fink J. Hereditary Spastic Paraplegia Overview. GeneReviews. February 3, 2009; http://www.ncbi.nlm.nih.gov/books/NBK1509/. Accessed 10/6/2011.
- What are the different ways in which a genetic condition can be inherited?. Genetics Home Reference Web site. September 23, 2013; http://ghr.nlm.nih.gov/handbook/inheritance/inheritancepatterns. Accessed 9/24/2013.
- Fink JF. Hereditary spastic paraplegia Overview. GeneReviews Website. March 4, 2008; http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=hsp. Accessed 5/6/2008.