Living with Creutzfeldt-Jakob disease
A rare brain disease caused by prions that leads to changes in sleep, personality, movement, and vision.
Understanding Creutzfeldt-Jakob disease
The brain tissue becomes sponge-like (spongiform degeneration). Signs and symptoms include sleep disturbances, personality changes, difficulty with speech and language (aphasia), poor coordination (ataxia), muscle wasting and weakness, vision loss, and sudden muscle jerks (myoclonus).
Signs & symptoms
GARD doesn't list a full symptom list for this condition. Its summary mentions these:
- Sleep problems
- Personality changes
- Trouble with speech (aphasia)
- Poor coordination (ataxia)
- Muscle weakness and wasting
- Vision loss and muscle jerks (myoclonus)
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 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 caused by prions, abnormal proteins that damage the brain. GARD says it is transmittable.
Also known as: cjd; cjd - creutzfeldt-jakob disease; cjd (creutzfeldt jakob disease); classic creutzfeldt-jakob disease; creutzfeldt jacob disease; creutzfeldt jacob syndrome
Patient organizations
- Creutzfeldt-Jakob Disease Foundation, IncCreutzfeldt-Jakob disease · United States
You are more than your diagnosis
Perspectives from people navigating life with Creutzfeldt-Jakob disease.
Explore research for Creutzfeldt-Jakob disease
Explore actively recruiting Creutzfeldt-Jakob disease studies with HealthSpark.
Find actively recruiting studies for 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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