The Generative Brain

Exposure and safety

CJD is not passed on through ordinary contact, including caring for someone at home. The known ways people have acquired prion disease are rare and specific: certain past medical procedures, and eating BSE-infected beef in the case of variant CJD.

Everyday contact and special situations
No known risk
  • Touching and hugging
  • Sharing meals
  • Caring for someone at home
Handled with extra care
  • Some surgery and instruments
  • Certain tissues in hospitals
  • Blood and organ donation rules

The first worry in many families is whether the illness can spread to them. The short answer is reassuring, and the detail is on the pages below.

Can I catch it from the person I am caring for?

No. There is no evidence that sporadic CJD passes between people through ordinary day to day contact. Prion diseases are not infectious in the usual way: they do not spread through the air, through body fluids in everyday life, or through intimate contact. Support organisations in the UK and the United States both say that relatives and carers need no special precautions.

The one practical point is about blood. Anyone who might come into contact with a person’s blood, for example a nurse or someone dressing a wound, is advised to wear gloves and follow the standard precautions used for every patient.

Is CJD contagious? goes through this in more detail. Care settings covers hospitals, care homes and home care.

How have people acquired prion disease?

The known routes are rare and specific.

Some cases, called iatrogenic, came from medical treatment: human growth hormone taken from pituitary glands before the mid 1980s, grafts of dura mater (the membrane around the brain), corneal transplants and, in a few cases before 1976, contaminated instruments used in brain surgery. Current guidelines have made these cases very rare.

Variant CJD came from eating beef from cattle with BSE, known as mad cow disease. It has also been passed by blood transfusion on a small number of occasions in the UK.

Inherited prion disease is caused by a gene change passed from parent to child. It is not caught from anyone. Genetics explains it.

Sporadic CJD, the most common form, has no known cause.

The safety pages

Each page takes one question at a time:

Who do I ask about my own situation?

Questions about a particular procedure, a transfusion or a family history go to the treating team or the GP. In the UK, suspected cases are referred to the National CJD Research and Surveillance Unit in Edinburgh or the National Prion Clinic in London, and these services advise local teams. In the United States, the CJD Foundation helpline on 1-800-659-1991 can point families to the right people. The Start here routes lead to the page that fits your situation, and How clinical trials work explains research that families often ask about at the same time.

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