Living with Infantile-onset ascending hereditary spastic paralysis
An inherited condition that begins in infancy with stiff, weak legs and slowly spreads to the arms, neck, and head.
Understanding Infantile-onset ascending hereditary spastic paralysis
These disorders cause growing muscle stiffness (spasticity) and eventual paralysis of the legs from loss of motor neurons (nerve cells that control muscles). This type starts with the legs only, then affects the arms, neck, and head. It begins in the newborn period or infancy.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Muscle stiffness (spasticity)
- Strong reflexes
- Trouble speaking clearly (dysarthria)
- Loss of speech (anarthria)
- Trouble chewing
- Abnormal eye movements
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.
- 3Consider genetic testing
Changes in ALS2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 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 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
Changes in the ALS2 gene cause this condition. It is inherited in an autosomal recessive pattern, meaning a child inherits a changed copy of the gene from each parent.
Also known as: autosomal recessive juvenile amyotrophic lateral sclerosis; iahsp; iahsp - infantile onset ascending hereditary spastic paralysis; infantile ascending hereditary spastic paralysis
Patient organizations
- Spastic Paraplegia FoundationInfantile-onset ascending hereditary spastic paralysis · United States
- Periodic Paralysis AssociationInfantile-onset ascending hereditary spastic paralysis · United States
You are more than your diagnosis
Perspectives from people navigating life with Infantile-onset ascending hereditary spastic paralysis.
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