Living with Creutzfeldt-Jakob disease, sporadic
A rare brain disorder that usually appears later in life and runs a rapid course, affecting memory, behavior, and movement.
Understanding Creutzfeldt-Jakob disease, sporadic
Early on, people may have failing memory, behavior changes, poor coordination, and vision problems. As it progresses, mental decline becomes severe, with uncontrolled movements, blindness, and weakness. It can be hard to diagnose because it looks like other forms of dementia, and confirming it requires testing a small sample of brain tissue. Most cases are sporadic, meaning the cause is unknown. About 5 to 10 percent are inherited (familial), and some are acquired through contact with infected brain tissue (iatrogenic) or by eating infected beef (variant CJD).
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Memory loss and confusion
- Behavior changes
- Poor coordination (ataxia)
- Sudden muscle jerks (myoclonus)
- Dementia
- Visual hallucinations
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.
- 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)
- 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 a buildup of abnormal prion proteins in the brain. For most people the reason is unknown (sporadic CJD). About 5 to 10 percent of cases are due to an inherited genetic change (familial CJD). It can also be acquired through contact with infected brain tissue or by consuming infected beef.
Also known as: scjd; sporadic cjd; sporadic creutzfeldt-jakob disease; sporadic jakob-creutzfeldt disease
Patient organizations
- Creutzfeldt-Jakob Disease Foundation, IncCreutzfeldt-Jakob disease, sporadic · United States
You are more than your diagnosis
Perspectives from people navigating life with Creutzfeldt-Jakob disease, sporadic.
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