Living with Inherited Creutzfeldt-Jakob disease
A rare inherited brain disease with fast-worsening memory and thinking loss, behavior changes, and movement problems.
Understanding Inherited Creutzfeldt-Jakob disease
Features include rapidly worsening dementia, personality and behavior changes, psychiatric problems, muscle jerks (myoclonus), and poor coordination (ataxia). It has a genetic cause and sometimes a family history of dementia. It usually begins in adults and older adults.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Rapidly worsening dementia
- Personality and behavior changes
- Anxiety
- Muscle jerks (myoclonus)
- Poor coordination (ataxia)
- Vision problems
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.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- 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 Creutzfeldt-Jakob Disease Foundation, Inc
- 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
It is a genetic prion disease. GARD lists autosomal dominant inheritance, meaning one changed copy of the gene can be enough.
Also known as: creutzfeldt-jakob disease, familial; creutzfeldt-jakob disease, variant, resistance to; familial creutzfeldt-jakob; fcjd (familial creutzfeldt-jakob disease); hereditary creutzfeldt jacob disease; inherited cjd
Patient organizations
- Creutzfeldt-Jakob Disease Foundation, IncInherited Creutzfeldt-Jakob disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Inherited Creutzfeldt-Jakob disease.
Explore research for Inherited Creutzfeldt-Jakob disease
Explore actively recruiting Inherited Creutzfeldt-Jakob disease studies with HealthSpark.
Find actively recruiting studies for Inherited Creutzfeldt-Jakob 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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