The Psychological Toll of Living with a Rare Disease

"It is probably safe to say that progressive supranuclear palsy is not a household name. Unlike Parkinson's or Alzheimer's, conditions that have become part of the common vocabulary, progressive supranuclear palsy remains obscure, hidden behind a long, intimidating name. In neurology, we have many such conditions whose names sound more like tongue-twisters than diagnoses. This disorder itself was first described in 1964, once known as Steele-Richardson-Olszewski syndrome."

"The term supranuclear palsy refers to a characteristic problem with eye movements. This issue does not arise from damage to the eye muscles themselves, but rather to the brain pathways that control them. In addition to these eye movement problems, many patients develop motor symptoms, such as stiffness and slowness, which mimic Parkinson's disease. For this reason, progressive supranuclear palsy belongs to a group of rare neurological conditions referred to as " Parkinson-like ", or "atypical Parkinsonism.""

"This group includes other unfamiliar disorders such as Multiple System Atrophy (formerly Shy-Drager syndrome and olivopontocerebellar atrophy) and Corticobasal Syndrome. Sometimes, even Lewy body dementia is grouped here due to overlapping features. These conditions share a frustrating reality: they are progressive neurodegenerative diseases, and at present, there is no cure. What's Happening in the Brain? Progressive supranuclear palsy belongs to a family of neurodegenerative diseases known as tauopathies, driven by abnormal accumulation"

Progressive supranuclear palsy is a rare neurodegenerative condition characterized by impaired eye movements due to dysfunction in brain pathways controlling the eyes. Many patients develop stiffness and slowness that mimic Parkinson's disease, placing the disorder within atypical Parkinsonism alongside conditions such as Multiple System Atrophy and Corticobasal Syndrome. These disorders are progressive tauopathies driven by abnormal protein accumulation and currently lack cures. Accurate diagnosis reduces uncertainty, guides clinical care, and links patients with resources and support. Framing disability as a shared human experience promotes belonging, compassion, and better support for affected individuals.

Read at Psychology Today