Living with Juvenile amyotrophic lateral sclerosis
A rare nerve disease starting in childhood that gradually affects the nerve cells that control muscles, causing stiffness, weakness, and speech and walking problems.
Understanding Juvenile amyotrophic lateral sclerosis
It starts in childhood. Symptoms include facial stiffness, slurred speech (dysarthria), and a stiff walk. Some people have uncontrolled laughing or crying, mild wasting of the legs and hands, bladder problems, or sensory changes. It is usually slowly progressive, though the speed varies.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Stiff, awkward walking (spastic gait)
- Slurred or difficult speech (dysarthria)
- Muscle weakness
- Muscle wasting in the hands or legs
- Muscle stiffness (spasticity)
- Muscle spasms or abnormal postures (dystonia)
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
ALS Association 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: ALS Association
- 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 ALS Association
- 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
Several subtypes are linked to changes in genes such as ALS2, SIGMAR1, SPG11, and SETX, and sometimes UBQLN2, FUS, and TARDBP. Inheritance can be autosomal recessive or autosomal dominant depending on the gene, and changes can be inherited or happen for the first time in the person.
Also known as: jals; jals - juvenile amyotrophic lateral sclerosis; juvenile charcot disease; juvenile lou gehrig disease
Patient organizations
- ALS AssociationJuvenile amyotrophic lateral sclerosis · United States
You are more than your diagnosis
Perspectives from people navigating life with Juvenile amyotrophic lateral sclerosis.
Explore research for Juvenile amyotrophic lateral sclerosis
Explore actively recruiting Juvenile amyotrophic lateral sclerosis studies with HealthSpark.
Find actively recruiting studies for Juvenile amyotrophic 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 amyotrophic 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 amyotrophic 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 amyotrophic 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.