Overview
Adult-onset cervical dystonia, DYT23 type (also sometimes called DYT23 dystonia) is a rare inherited movement disorder that causes the muscles in the neck to contract involuntarily and repeatedly. These uncontrolled muscle contractions force the head and neck into abnormal, often painful positions. The condition belongs to a broader group of movement disorders called dystonias, and specifically affects the cervical (neck) region. It is caused by a change (mutation) in the CIZ1 gene. Most people with DYT23 first notice symptoms in adulthood, typically in middle age. The neck may twist, tilt, or turn to one side without the person being able to control it. This can cause significant pain, muscle stiffness, and difficulty holding the head in a normal position. Some people also experience tremor of the head or neck. The severity can vary quite a bit from person to person, even within the same family. There is currently no cure for DYT23 cervical dystonia. Treatment focuses on relieving symptoms and improving quality of life. The most effective and widely used treatment is injections of botulinum toxin (such as Botox or Dysport) into the affected neck muscles, which temporarily relaxes them. Oral medications, physical therapy, and in some cases deep brain stimulation (DBS) surgery may also help. With proper management, many people are able to maintain a reasonable quality of life, though ongoing treatment is usually needed.
Also known as:
Key symptoms:
Involuntary twisting or turning of the neck to one sideAbnormal head posture that is hard to controlNeck pain and muscle stiffnessHead tremor (shaking of the head)Muscle spasms in the neckDifficulty holding the head uprightWorsening of symptoms with stress or fatigueTemporary relief when touching the chin or face (called a 'sensory trick')Shoulder elevation on one sideReduced range of motion in the neck
Clinical phenotype terms (17)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Adult-onset cervical dystonia, DYT23 type.
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Specialists
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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 Adult-onset cervical dystonia, DYT23 type.
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Caregiver Resources
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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.Is genetic testing available to confirm the DYT23 diagnosis, and should my family members be tested?,Am I a good candidate for botulinum toxin injections, and which brand or formulation would you recommend for me?,What oral medications might help alongside injections, and what are the side effects?,Should I see a physical therapist, and what type of exercises are safe for my neck?,What signs should prompt me to seek urgent care or contact you between appointments?,Is deep brain stimulation something I should consider if injections stop working?,Are there any clinical trials or research studies I could participate in?
Common questions about Adult-onset cervical dystonia, DYT23 type
What is Adult-onset cervical dystonia, DYT23 type?
Adult-onset cervical dystonia, DYT23 type (also sometimes called DYT23 dystonia) is a rare inherited movement disorder that causes the muscles in the neck to contract involuntarily and repeatedly. These uncontrolled muscle contractions force the head and neck into abnormal, often painful positions. The condition belongs to a broader group of movement disorders called dystonias, and specifically affects the cervical (neck) region. It is caused by a change (mutation) in the CIZ1 gene. Most people with DYT23 first notice symptoms in adulthood, typically in middle age. The neck may twist, tilt, o
How is Adult-onset cervical dystonia, DYT23 type inherited?
Adult-onset cervical dystonia, DYT23 type follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Adult-onset cervical dystonia, DYT23 type typically begin?
Typical onset of Adult-onset cervical dystonia, DYT23 type is adult. Age of onset can vary across affected individuals.