The Psychological Toll of Living with a Rare Disease

Key points

Rare diseases are individually uncommon but collectively not that rare.

Accurate diagnosis, even without a cure, reduces uncertainty, guides care, and connects patients to resources.

Viewing disability as a shared human experience, not an exception, fosters belonging and compassion.

Rethinking Disability as common human experience Source: renma pixabay

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, onc