Overview
X-linked dystonia-parkinsonism (XDP) is a rare and serious brain movement disorder that affects almost exclusively men from the Philippines, particularly those with ancestry from the island of Panay. It is also known by several other names, including 'Lubag,' which is the local Filipino term for the condition, and 'DYT3.' The disease causes two main types of movement problems: dystonia, which means involuntary muscle contractions that twist or pull the body into abnormal positions, and parkinsonism, which includes slowness of movement, stiffness, and tremors similar to Parkinson's disease. Most men with XDP first notice symptoms in their 30s or 40s, though the age can vary. The disease starts in the brain in an area called the striatum, where nerve cells gradually break down over time. Early on, dystonia is usually the main problem, often starting in one part of the body like the jaw, neck, or a limb, and then spreading. Over years, parkinsonism features tend to become more prominent as the dystonia may lessen somewhat. There is currently no cure for XDP. Treatment focuses on managing symptoms and improving quality of life. Medications used for Parkinson's disease, such as levodopa, can help some patients. Botulinum toxin injections can ease localized dystonia. Deep brain stimulation (DBS) surgery has shown meaningful benefit for some patients and is one of the most promising current treatment options. Research into gene therapy and disease-modifying treatments is actively ongoing.
Also known as:
Key symptoms:
Involuntary muscle twisting or cramping (dystonia)Slowness of movement (bradykinesia)Muscle stiffness and rigidityTremors or shakingDifficulty walking or abnormal gaitJaw or face muscle spasmsNeck pulling to one side (cervical dystonia)Difficulty speaking or swallowingLoss of balanceReduced facial expressionDifficulty with fine motor tasks like writing or buttoning clothesFatigue and reduced staminaDepression and emotional changes
Clinical phenotype terms (19)— hover any for plain English
X-linked recessive
Carried on the X chromosome; typically affects males more than females
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for X-linked dystonia-parkinsonism.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for X-linked dystonia-parkinsonism at this time.
New trials open frequently. Follow this disease to get notified.
Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to X-linked dystonia-parkinsonism.
Community
No community posts yet. Be the first to share your experience with X-linked dystonia-parkinsonism.
Start the conversation →Latest news about X-linked dystonia-parkinsonism
No recent news articles for X-linked dystonia-parkinsonism.
Follow this condition to be notified when news becomes available.
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What stage is my disease at, and what changes should I expect in the coming years?,Am I a good candidate for deep brain stimulation surgery, and where can I be evaluated for it?,Which medications are most likely to help my specific symptoms — the dystonia, the stiffness, or both?,Should my family members be tested for the XDP gene change, and what does a positive result mean for them?,Are there any clinical trials or research studies I could participate in?,What therapies — physical, occupational, or speech — should I start now to protect my function?,What support resources are available for me and my family, including mental health support?
Common questions about X-linked dystonia-parkinsonism
What is X-linked dystonia-parkinsonism?
X-linked dystonia-parkinsonism (XDP) is a rare and serious brain movement disorder that affects almost exclusively men from the Philippines, particularly those with ancestry from the island of Panay. It is also known by several other names, including 'Lubag,' which is the local Filipino term for the condition, and 'DYT3.' The disease causes two main types of movement problems: dystonia, which means involuntary muscle contractions that twist or pull the body into abnormal positions, and parkinsonism, which includes slowness of movement, stiffness, and tremors similar to Parkinson's disease. Mos
How is X-linked dystonia-parkinsonism inherited?
X-linked dystonia-parkinsonism follows a x-linked recessive inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does X-linked dystonia-parkinsonism typically begin?
Typical onset of X-linked dystonia-parkinsonism is adult. Age of onset can vary across affected individuals.
Which specialists treat X-linked dystonia-parkinsonism?
16 specialists and care centers treating X-linked dystonia-parkinsonism are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.