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?

CJD is caused by abnormal infectious proteins called prions. A person can be infected by prions in different ways depending on what type of CJD they have.

  • Sporadic CJD – The exact cause is unknown but it is thought to be due to a normal brain protein misfolding and turning into a prion.
  • Variant CJD – Caused by consuming meat from a cow that had a condition called bovine spongiform encephalopathy which is also known as BSE or mad cow disease.
  • Familial CJD – Occurs when a person inherits the prion protein gene that carries a mutation causing prions to form in their brain.
  • Iatrogenic CJD – Occurs when the infectious prions are accidentally spread through medical or surgical treatment.

What are the symptoms of Creutzfeldt-Jakob disease?

Symptoms of CJD include:

  • A decline in intellect and memory
  • Changes in personality
  • Loss of balance and coordination
  • Slurred speech
  • Vision problems/blindness
  • Involuntary 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?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

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.

0151 298 2999

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