Living with Dystonia 23
A rare inherited dystonia that begins in adulthood and mainly affects the neck, often with a mild head tremor.
Understanding Dystonia 23
It is a focal cervical dystonia, which means it affects the neck. It often causes torticollis, where the head twists or tilts. Some people also have a mild head tremor and a tremor in the limbs. GARD says it is non-progressive, meaning it does not get worse over time. It begins in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Wry neck (torticollis)
- Neck muscle tightening (cervical dystonia)
- Head tremor
- Limb tremor
- Writer's cramp
- Trouble using the voice (dysphonia)
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 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 a person's genes cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: adult-onset cervical dystonia dyt23 type; adult-onset cervical dystonia, dyt23 type; dystonia type 23; dyt23
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 23.
Explore research for Dystonia 23
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