Living with Prion disease
A group of rare conditions that affect the brain, causing memory, personality and behavior changes, dementia and trouble with coordination.
Understanding Prion disease
In people these conditions impair brain function and cause changes in memory, personality and behavior, a decline in thinking skills (dementia) and abnormal movements, especially trouble coordinating movement (ataxia). Signs typically begin in adulthood and worsen over time.
Signs & symptoms
GARD doesn't list a separate symptom list for this condition. It describes these:
- Memory changes
- Personality and behavior changes
- Dementia (decline in thinking skills)
- Trouble coordinating movement (ataxia)
- Abnormal movements
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
GARD doesn't describe a cause for this condition in this record.
Also known as: prion disease pathway; prion induced disorder; prion protein disease; spongiform encephalopathy; transmissible spongiform encephalopathy
Patient organizations
Rare-disease groups that can help
- 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 Prion disease.
Explore research for Prion disease
Explore actively recruiting Prion disease studies with HealthSpark.
Find actively recruiting studies for Prion disease 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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