In this episode of the ICU ("I See You") Podcast from the Vestibular Disorders Association, experts and patient advocate Denise Luken explore CANVAS (Cerebellar Ataxia, Neuropathy, and Vestibular Areflexia Syndrome), a rare, progressive genetic condition linked to RFC1 gene expansions. It simultaneously affects the cerebellum (coordination), peripheral sensory nerves, and inner-ear vestibular system—creating a debilitating "triple hit" that leads to unsteadiness, falls, oscillopsia (blurred vision with head movement), chronic cough, and worsening gait, often starting subtly in midlife. The discussion covers the long diagnostic journey (frequently misdiagnosed as idiopathic ataxia), emerging genetic insights, management through physical therapy and adaptive strategies, and the lived experience of staying active despite challenges. This offers valuable insights for patients, families, and clinicians dealing with complex balance disorders.
