Brown-Vialetto-Van Laere Syndrome (BVVL) is an extremely rare neurological disorder that affects motor neuron function. BVVL is characterized by paralysis (palsies) of the cranial nerves and sensorineural hearing loss. Because the condition is degenerative, which means body functions like breathing, hearing, talking, movement, balance and heart function will deteriorate over time, becoming progressively more disabling. In 2008 only 58 cases had been reported, though the number is higher now because of greater medical recognition. While there is no effective treatment for all cases of BVVL, there have been reports of stabilization or reversal of degenerative symptoms with the use of a new B2 Protocol. Receiving medical care for this condition is very important because when untreated, symptoms can often be fatal.
Rare disease organizations exist to provide support and resources to people struggling with rare disease in their lives.