Living with Dystonia 25
A rare inherited dystonia that mostly affects the jaw and face and is brought on by speaking, starting in adulthood.
Understanding Dystonia 25
It causes involuntary tightening of the chewing (masticatory) muscles, which can lead to trouble with speech (dysarthria) or swallowing (dysphagia). It begins in adulthood. Dystonia may also affect the neck, voice box, tongue, or limbs.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Face and jaw dystonia
- Voice box (laryngeal) dystonia
- Tongue dystonia
- Wry neck (torticollis)
- Dystonia in the limbs
- Dystonia in one area (focal)
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 GNAL 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
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 Dystonia Medical Research Foundation
- 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
GARD says changes in the GNAL gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: autosomal dominant focal dystonia dyt25 type; autosomal dominant focal dystonia, dyt25 type; dystonia type 25; dystonic disorder caused by mutation in gnal; dyt25; gnal dystonic disorder
Patient organizations
- Dystonia Medical Research FoundationDystonia · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Dystonia 25.
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