Perry Syndrome FoundationEducation · Connection · Hope

Understanding the disease

What is Perry syndrome?

Perry syndrome, also called Perry disease, is part of the spectrum of DCTN1-related neurodegeneration. It usually begins in adulthood and progresses over time.

Understanding the condition

Changes in the DCTN1 gene affect dynactin, a protein complex involved in transport inside nerve cells. The condition is usually inherited in an autosomal dominant pattern, meaning each child of an affected person has a 50% chance of inheriting the family variant. New (de novo) variants can also occur.

Four signs of Perry syndrome

Parkinsonism

Slowness, stiffness, tremor, balance changes, or a shuffling gait. Symptoms may resemble Parkinson’s disease.

Breathing changes

Slower or shallow breathing is often first noticed during sleep. Symptoms may be subtle and need active monitoring.

Depression or apathy

Depression, loss of motivation, social withdrawal, anxiety, or other behavior and mood changes.

Weight loss

Unexpected and sometimes rapid weight loss, which can occur even when appetite remains good.

Published figures, not predictions

average age of onset
49 years
average reported course
about 5 years
inheritance risk for each child
50%

Figures describe published groups and cannot predict one person’s course.

Two common questions

Is Perry syndrome the same as Parkinson’s disease?

No. It can cause parkinsonism, but it is a distinct inherited neurodegenerative condition linked to DCTN1 and has important respiratory, mood, and weight features.

Can someone have it without a known family history?

Yes. Family history can be incomplete or unclear, and a new DCTN1 variant can occur. A genetics professional should interpret individual risk.

Sources for this page

Sources checked August 20, 2026