Families push for PSP awareness as rare neurological condition goes undiagnosed

Patients lose independence, mobility, speech and vision; families become full-time caregivers; delayed diagnoses extend suffering and prevent timely intervention.

In quiet corners of the UK, roughly 5,000 people are living with a disease most doctors have never encountered — progressive supranuclear palsy, a neurological condition that strips away movement, speech, and vision while wearing the face of something more familiar. Families like those of Gillian Manitara and Clive Hughes have learned, too late and too slowly, that a misdiagnosis is not merely a medical error but a theft of time — months and years spent treating the wrong illness while the right one advances unchecked. Their stories join a growing call for the kind of awareness that might, for

Families push for PSP awareness as rare neurological condition goes undiagnosed

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