Living with X-linked dystonia-parkinsonism
A movement disorder found only in people of Filipino descent, mostly men, starting in adulthood.
Understanding X-linked dystonia-parkinsonism
It affects men much more often than women. Parkinsonism, with tremor, slow movement, stiffness, poor balance, and a shuffling walk, is usually first. Later many people develop dystonia, sustained involuntary muscle spasms that often start in the eyes, jaw, or neck and spread. Severity varies widely.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Tremor
- Slow movement (bradykinesia)
- Muscle stiffness
- Poor balance
- Shuffling walk
- Muscle spasms (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.
- 3Consider genetic testing
Changes in TAF1 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
Parkinson & Movement Disorder Alliance and Dystonia Medical Research 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: Parkinson & Movement Disorder Alliance, Dystonia Medical Research 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 Parkinson & Movement Disorder Alliance 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
X-linked dystonia-parkinsonism is caused by changes in the TAF1 gene and follows X-linked inheritance.
Also known as: dystonia-parkinsonism, x-linked, x-linked recessive; dyt-taf1; dyt3; lubag; lubag syndrome; torsion dystonia parkinsonism filipino type
Patient organizations
- Parkinson & Movement Disorder AllianceX-linked dystonia-parkinsonism · United States
- Dystonia Medical Research FoundationDystonia · United States
You are more than your diagnosis
Perspectives from people navigating life with X-linked dystonia-parkinsonism.
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