Living with Juvenile primary lateral sclerosis
A rare nerve condition that begins in early childhood with slowly worsening muscle stiffness and weakness in the legs, arms, and face.
Understanding Juvenile primary lateral sclerosis
It is caused by damage to motor neurons, nerve cells in the brain and spinal cord that control muscle movement. Symptoms begin in early childhood and progress slowly over many years. Early signs are clumsiness, leg weakness and stiffness, and balance trouble. Later, stiffness spreads to the arms and hands, and people may have slurred speech, drooling, trouble swallowing, and loss of the ability to walk.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Muscle stiffness (spasticity)
- Muscle weakness
- Stiff, awkward walking
- Balance problems
- Slurred speech
- Trouble swallowing
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
- 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 autosomal recessive, meaning a child inherits a changed copy of the gene from each parent.
Also known as: jpls; juvenile pls; plsj
Patient organizations
- Spastic Paraplegia FoundationJuvenile primary lateral sclerosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Juvenile primary lateral sclerosis.
Explore research for Juvenile primary lateral sclerosis
Explore actively recruiting Juvenile primary lateral sclerosis studies with HealthSpark.
Find actively recruiting studies for Juvenile primary lateral sclerosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Juvenile primary lateral sclerosis studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Juvenile primary lateral sclerosis
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Juvenile primary lateral sclerosis experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.