Living with Blepharospasm-oromandibular dystonia syndrome
A rare nervous system condition with eyelid spasms and jaw and tongue spasms, usually in adulthood.
Understanding Blepharospasm-oromandibular dystonia syndrome
It includes blepharospasm (abnormal eyelid movement), oromandibular dystonia (jaw and tongue spasms), and sometimes cervical dystonia (neck spasms). It usually starts in adulthood. Symptoms and severity vary.
Signs & symptoms
Symptoms vary from person to person. The summary describes these:
- Abnormal eyelid movement (blepharospasm)
- Jaw and tongue spasms
- Neck spasms in some people
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
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: 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 Beat Dystonia 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
The exact cause is unknown.
Also known as: blepharospasm - oromandibular dystonia; brueghel syndrome; meige dystonia; meige syndrome
Patient organizations
- Beat DystoniaBlepharospasm-oromandibular dystonia syndrome · Benign Essential Blepharospasm Research Foundation
- Dystonia EuropeBlepharospasm-oromandibular dystonia syndrome · Tyler's Hope for a Dystonia Cure
- Dystonia Medical Research FoundationDystonia · United States
You are more than your diagnosis
Perspectives from people navigating life with Blepharospasm-oromandibular dystonia syndrome.
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