Creutzfeldt-Jakob disease (CJD)

Overview

CJD is caused by misfolded proteins called prions that damage the brain quickly.

Most cases happen by chance; a few are inherited or acquired.

Symptoms

Common signs:

• Fast memory loss
• Memory problems

Less common

• Jerks
• Trouble walking

Look up a symptom: New confusion or not acting like themselves

When to get medical care

Causes

Prion proteins.

Does it spread or run in families?

• It usually doesn't spread from person to person.
• People get it from: eating beef from cattle with mad cow disease, medical procedures, eating infected meat, or inherited genes.

Who is more likely to get it

• Adults 60 to 70: Most common

Possible complications

• Pneumonia: From trouble swallowing

Diagnosis

A clinician asks about your symptoms and may order tests.

The exam

A physical exam.

Tests

Tests, if needed:

• MRI:
• Spinal tap:

Treatment

Treatment depends on the cause and how severe it is.

Self-care

• Care support
• Join a support group

Which doctor treats this

• Start with your primary care provider (family doctor or internist).
• They may send you to a neurologist (brain and nerve doctor).

Living with it

• Keep a simple diary of symptoms, triggers, and medicines to bring to visits.
• Bring a list of your medicines and questions to each visit.
• Stay active in ways that feel good to you.
• Get enough sleep and manage stress.
• Long-term illness can affect mood. Tell your doctor if you feel down or anxious.

Back to school, work, or sports

• Most people can keep working or going to school.
• Ask about changes that help, like extra breaks or a flexible schedule. Workers may be covered by the ADA. Students may get a 504 plan.

Children, pregnancy, and older adults

• Families: Hospice and support groups help.
• Adults over 60: Most common.

Pregnancy and breastfeeding

• If you're pregnant or planning to be, tell your prenatal provider about this condition.
• Some infections can pass to the baby during pregnancy or birth. Tell your provider if you've been exposed.
• Don't start or stop any medicine on your own. Some are safe in pregnancy and some need to be changed.
• Ask before taking any pain reliever. The FDA advises avoiding ibuprofen and naproxen after 20 weeks unless your doctor says to.
• Breastfeeding: Most medicines are fine, but ask. The NIH LactMed database lists what's known about each one.

For caregivers

• Go to visits when you can and take notes.
• Keep a list of medicines, allergies, and doctors in one place.
• Learn the warning signs that need fast care.
• Take breaks and ask for help. Caregivers need care too.

Outlook

There's no cure; care focuses on comfort.

Getting ready for your visit

Bring a list of your symptoms and medicines.

What to bring

• A list of your medicines and supplements
• Notes on when symptoms started and what makes them better or worse

Questions to ask

• What's causing this?
• What treatment do you recommend?
• What support services are available?

Research studies

Research studies test new ways to find and treat health problems. Some are looking for volunteers. Talk with your doctor before joining one.

Search ClinicalTrials.gov for studies on Creutzfeldt-Jakob disease (CJD)