Living with Perry syndrome
A progressive brain condition in adults with Parkinson-like movement changes, mood changes, weight loss, and slow breathing.
Understanding Perry syndrome
Signs typically appear in a person's forties or fifties. Parkinsonism (slow movement, stiffness, tremor) and psychiatric changes, such as depression, apathy, and withdrawing from family and friends, usually come first. Many people lose weight early. Slow breathing (hypoventilation), mostly at night, is a later feature.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Parkinson-like symptoms (slow movement, stiffness)
- Tremor
- Depression
- Loss of interest or emotion (apathy)
- Weight loss
- Slow breathing, mostly at night (hypoventilation)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Consider genetic testing
Changes in DCTN1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Parkinson & Movement Disorder Alliance may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Parkinson & Movement Disorder Alliance
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with Parkinson & Movement Disorder Alliance
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
Changes in the DCTN1 gene cause this condition. It is autosomal dominant, which means one changed copy of the gene is enough to cause it.
Also known as: parkinsonism with alveolar hypoventilation and mental depression
Patient organizations
- Parkinson & Movement Disorder AllianceParkinsonism · United States
Broader rare-disease groups
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Perry syndrome.
Explore research for Perry syndrome
Explore actively recruiting Perry syndrome studies with HealthSpark.
Find actively recruiting studies for Perry syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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