The Generative Brain

I am worried about exposure

CJD does not spread through ordinary contact with a person who has it. The rare acquired cases came from specific medical routes decades ago and from BSE-infected beef. For a worry about a particular operation, transfusion or exposure, the GP can ask the national surveillance service.

A worry about exposure usually has one specific thing behind it: a letter about an old operation, a transfusion years ago, a relative who is ill, a meal, a hunting trip. Most of these worries can be settled with facts that already exist.

What is actually known?

CJD does not spread through ordinary day to day contact, including close contact with someone who has the illness. Caring for a person at home, sharing a house or a bed, and helping with washing and feeding carry no known risk. Support organisations in the UK and the United States say that no special precautions are needed.

The acquired cases on record came through specific routes. Human growth hormone made from pituitary glands before the mid 1980s, dura mater grafts, corneal transplants and, before 1976, contaminated brain surgery instruments account for the medical cases, and current guidelines have made them very rare. Variant CJD came from eating beef from cattle with BSE and has been passed by blood transfusion on a small number of occasions in the UK. Sporadic CJD, the most common form, has no known cause and is not caused by any other prion disease.

Is CJD contagious? sets this out in full. Deer and chronic wasting disease is for the hunting question, and the Exposure and safety hub lists the rest.

The next three steps

  1. Write down the specific worry: what happened, when and where. A date, a hospital and a procedure name are what a doctor will need. If you have received a letter from a hospital or health authority, keep it and follow the contact details it gives.

  2. Take it to the GP or family doctor. For a question about a past operation, a transfusion or a tissue graft, the doctor can contact the specialist services. In the UK the National CJD Research and Surveillance Unit in Edinburgh and the National Prion Clinic in London advise local clinicians, so the doctor is the route. In the United States, ask the doctor which specialist centre to consult. A doctor is also the person who can say whether a particular symptom has anything to do with any of this.

  3. Talk it through. The CJD Support Network helpline on 0800 774 7317 supports people at increased risk as well as those who are ill, and the CJD Foundation helpline on 1-800-659-1991 takes questions about prion disease by phone and email. Saying the worry out loud to someone who knows the illness often shrinks it.

If the worry is about inheritance

That is a different question, with a different route. Prion disease runs in my family covers it. If someone close to you has died and the worry came with that, After a death is the page. The Start here page lists every route.

Whether a particular exposure applies to you is something only a doctor with your history can say.

Sources for this page