Living with Hereditary spastic paraplegia 34
An X-linked, pure type of hereditary spastic paraplegia with slowly worsening leg stiffness, starting in late childhood to early adulthood.
Understanding Hereditary spastic paraplegia 34
It causes a spastic walk, brisk reflexes, and ankle clonus (rhythmic jerking of the ankle). Some older adults also have leg pain and reduced vibration sense in the legs. It begins from late childhood to early adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Stiff legs (spasticity)
- Brisk reflexes
- Ankle clonus
- Shuffling walk
- Leg pain
- Reduced vibration sense in the legs
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
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: 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 Spastic Paraplegia Foundation
- 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 changes in genes (also called variants) cause this condition. It is X-linked, meaning the gene is on the X chromosome.
Also known as: hereditary spastic paraplegia type 34; spastic paraplegia 34, x-linked; spastic paraplegia 34, x-linked, x-linked recessive; spg34; x-linked spastic paraplegia 34; x-linked spastic paraplegia type 34
Patient organizations
- Spastic Paraplegia FoundationHereditary spastic paraplegia · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Hereditary spastic paraplegia 34.
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