Stories and videos
Watch a family’s story, hear from Perry syndrome specialists, and view published clinical examples. Some videos show real symptoms.
Featured family story
Hear directly from a family and the clinicians who helped connect movement symptoms and a respiratory crisis to Perry syndrome.
Video source: Mayo Clinic
A family and their clinicians share the path to diagnosis and what it means to live with this rare disease.
Read the full family storyEnglish→English captions are on by default. Choose another language from the CC menu.
Interviews and clinical examples
These links open the original publisher’s page. Some clinical videos show real symptoms.
International Parkinson and Movement Disorder Society
Movement Disorders Clinical Practice / PubMed Central
Movement Disorders Clinical Practice / PubMed Central
Published case summaries
The summaries below come from peer-reviewed case reports. We publish first-person stories only with the family’s written permission and final approval.
A diagnosis brought recurrent fainting, depression, movement changes, weight loss, and breathing risk into one clinical picture.
Two close relatives with the same DCTN1 variant had very different movement symptoms and respiratory courses.