What is the life expectancy of someone with VWM disease?

Creutzfeldt-Leukodystrophy is a variant of a group of rare brain disorders known as prion diseases, which affect the central nervous system. Life expectancy for individuals diagnosed with any prion disease, including Creutzfeldt-Leukodystrophy, can vary significantly based on factors including age at onset, the specific prion strain, and the progression of symptoms. Typically, patients may live for months to a few years post-diagnosis, experiencing a rapid decline in cognitive and motor functions. Most patients succumb to complications associated with the disease, such as infections or organ failure as the neurological decline progresses. Supportive care and management of symptoms are crucial for improving quality of life and extending survival through comfort and care.

Leukoencephalopathy with vanishing white matter - Wikipedia