Creutzfeldt-Jakob disease


What is Creutzfeldt-Jakob disease?

Creutzfeldt-Jakob disease (CJD) is a rare untreatable condition that affects the brain. It causes brain damage that worsens rapidly over time. Those with CJD
are especially vulnerable to infection.

What causes Creutzfeldt-Jakob disease?

There are main four types of CJD:

  • Sporadic CJD – unknown cause but mainly occurs in the middle-aged and elderly.
  • Variant CJD – linked to a prion disease which appears to affect younger people.
  • Familial or inherited CJD – rare but due to an inherited genetic defect.
  • Latrogenic CJD – results from accidental transmission by medical/surgical equipment.

What are the symptoms of Creutzfeldt-Jakob disease?

Symptoms of CJD include:

  • Loss of intellect and memory
  • Changes in personality
  • Loss of balance and coordination
  • Slurred speech
  • Vision problems/blindness
  • Abnormal jerking movements

Are you affected by Creutzfeldt-Jakob disease?

If you’re affected by Creutzfeldt-Jakob disease, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with Creutzfeldt-Jakob disease, emotional support such as counselling, phone befriending and group therapy and social activities to people with Creutzfeldt-Jakob disease from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0800 008 6417

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone affected by Creutzfeldt-Jakob disease

There’s currently no cure for CJD, so treatment aims to relieve symptoms and make the affected person feel as comfortable as possible.

This includes using medication such as antidepressants to help with anxiety and depression, and painkillers to relieve pain.

Some people will need nursing care and assistance with feeding.

We support carers, friends and family too

Are you a carer for or relative of someone with Creutzfeldt-Jakob disease? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including Creutzfeldt-Jakob disease, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The library at the Brain Charity has a range of resources on CJD and related disabilities.

Support groups

The national CJD research & surveillance unit (NCJDRSU)

Based at the University of Edinburgh.

Support groups at The Brain Charity

Are you interested in setting up a Creutzfeldt-Jakob disease support group, or do you already run one? Email to let us know.

Alternatively, check out our list of related support groups here.

Other charities

The CJD Support Network

The CJD Support Network, Market Drayton, TF9 4WN
Helpline: 0800 774 7317

The Cure CJD Campaign