Bilateral vestibulopathy, also called bilateral vestibular deficit or bilateral vestibular areflexia, is a rare disease characterized by loss of the organ of balance in both ears.
The disease is idiopathic when the cause is unknown.
This results in loss of balance and orientation in the environment, leading to gait disturbance and a high risk of falls. It results in a series of strange symptoms: visual instability, sensations of blurriness, floating, drunkenness, loss of reference in space, balance disorders, vertigo..., all these symptoms can lead to falls...
These chronic symptoms are exacerbated by fatigue, darkness, uneven or winding terrain,water environments(sea or swimming pool) as well as visually busy sttings (crowd, traffic, scrolling of the scenery, screens...)
Due to these unusual symptoms, and the fact that it is still not widely known, diagnosis is often delayed (an average of 3 years), after too many years of various explorations and consultations with doctors and specialists, mainly otolaryngologists (ENT) and neurologists... Whether the onset is sudden or more gradual, the symptoms, and the daily life impairments they cause, along with the diagnostic uncertainty, can lead to significant distress for patients.
The French organization AFVB brings together people with bilateral vestibular areflexia.
