Living with Hereditary spastic paraplegia
A group of inherited nerve conditions that slowly cause stiffness and weakness in the legs.
Understanding Hereditary spastic paraplegia
Upper motor neurons send signals from the brain and spinal cord to the nerves that move muscles. In HSP they slowly break down, leading to leg stiffness (spasticity) and weakness and trouble walking. In pure (uncomplicated) HSP, only the lower body is affected. In complicated HSP, other problems can occur, such as vision changes, poor balance, epilepsy, thinking changes, nerve damage, or deafness. It can start at any time in life.
Signs & symptoms
GARD doesn't list a symptom list for this condition, but the summary describes these signs:
- Stiff leg muscles (spasticity)
- Leg weakness
- Trouble walking
- Poor balance or coordination (in complicated forms)
- Seizures (in complicated forms)
- Vision or hearing problems (in complicated forms)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
National Ataxia Foundation and Spastic Paraplegia Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: National Ataxia Foundation, Spastic Paraplegia Foundation
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with National Ataxia Foundation and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says the different forms are caused by changes in different genes. Inheritance varies and can be autosomal dominant, autosomal recessive, or X-linked.
Also known as: familial spastic paraparesis; familial spastic paraplegia; familial spastic paraplegia syndrome; french settlement disease; hereditary spastic paraparesis; hsp
Patient organizations
- National Ataxia FoundationHereditary spastic paraplegia · United States
- Spastic Paraplegia FoundationHereditary spastic paraplegia · United States
- CureAP4 FoundationHereditary spastic paraplegia · Lilly and Blair Foundation
- The Maddi FoundationHereditary spastic paraplegia
You are more than your diagnosis
Perspectives from people navigating life with Hereditary spastic paraplegia.
Explore research for Hereditary spastic paraplegia
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