Living with Juvenile onset Parkinson disease 19A
A rare genetic brain and nerve condition with Parkinson-like stiffness, slow movement, and tremor starting in childhood or the teens.
Understanding Juvenile onset Parkinson disease 19A
Parkinsonism means symptoms like stiffness, slow movement, and tremors. Some people also have developmental delay, intellectual disability, mood disorders, or seizures.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Slow movements (bradykinesia)
- Stiffness (rigidity)
- Pill-rolling tremor
- Balance problems
- Trouble speaking clearly (dysarthria)
- Reduced facial expression
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
American Parkinson Disease Association, Parkinson & Movement Disorder Alliance and Parkinson's Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: American Parkinson Disease Association, Parkinson & Movement Disorder Alliance, Parkinson's 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 American Parkinson Disease Association 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 DNAJC6 gene cause this condition. It is autosomal recessive, meaning two changed copies of the gene, one from each parent, are needed to cause the disease.
Also known as: dnajc6 parkinson disease; juvenile onset parkinson disease type 19a; park19; parkinson disease caused by mutation in dnajc6
Patient organizations
- American Parkinson Disease AssociationJuvenile onset Parkinson disease 19A · United States
- Michael J. Fox Foundation for Parkinson's ResearchJuvenile onset Parkinson disease 19A · United States
- Parkinson & Movement Disorder AllianceJuvenile onset Parkinson disease 19A · United States
- Parkinson's FoundationJuvenile onset Parkinson disease 19A · United States
You are more than your diagnosis
Perspectives from people navigating life with Juvenile onset Parkinson disease 19A.
Explore research for Juvenile onset Parkinson disease 19A
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