What is the presentation of ADCY5 (adenylate cyclase 5) related disorder?

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Last updated: May 13, 2025View editorial policy

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From the Research

ACDY5 presentation typically involves multiple neurological symptoms, including dystonia, chorea, myoclonus, and characteristic facial dyskinesia, with a paroxysmal nature triggered by factors like stress, caffeine, or alcohol, as reported in the most recent study 1.

Key Features of ACDY5 Presentation

  • Dystonia, chorea, myoclonus, and facial dyskinesia are common symptoms
  • Paroxysmal episodes can be triggered by stress, caffeine, or alcohol
  • Sleep disturbances and developmental delay may also be present
  • The condition is caused by mutations in the ADCY5 gene, which encodes adenylate cyclase 5

Treatment and Management

  • Treatment is primarily symptomatic, with medications like benzodiazepines (particularly clonazepam at 0.5-2mg daily) and tetrabenazine (25-100mg daily in divided doses) sometimes providing partial relief
  • Caffeine avoidance is recommended as it can trigger symptoms
  • Deep brain stimulation may be considered in severe cases
  • Genetic counseling is important as ADCY5-related disorders follow an autosomal dominant inheritance pattern, though many cases arise from de novo mutations, as noted in 2 and 3

Diagnosis and Genetic Considerations

  • Genetic testing can confirm the diagnosis of ACDY5-related disorders
  • Somatic mosaicism and mode of inheritance can influence the phenotype, as discussed in 4 and 3
  • Recurrent mutations suggest particular functional importance of residues in disease pathogenesis, highlighting the need for careful consideration of genetic factors in diagnosis and management.

Professional Medical Disclaimer

This information is intended for healthcare professionals. Any medical decision-making should rely on clinical judgment and independently verified information. The content provided herein does not replace professional discretion and should be considered supplementary to established clinical guidelines. Healthcare providers should verify all information against primary literature and current practice standards before application in patient care. Dr.Oracle assumes no liability for clinical decisions based on this content.

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