Most people arrive here in a hurry, after a phone call or an appointment that changed things. You do not need to read the whole site. Choose the line below that sounds like you.
Which situation is yours?
- A doctor suspects CJD or prion disease: tests are under way and nobody has said anything for certain yet.
- Someone I love has been diagnosed: the diagnosis has been given and you want to know what happens next.
- Prion disease runs in my family: a relative has had an inherited form, or a gene change has been found.
- I am worried about exposure: a past operation, a transfusion, food, deer, or contact with someone who is ill.
- After a death: the post mortem, the paperwork and the grief.
- Urgent support and who to call: you need someone to talk to today.
Each route is short. It opens with a few calm sentences, then gives the next three steps, with a link for each and the people to ask.
Is there someone to phone?
Yes. In the United States the CJD Foundation runs a helpline on 1-800-659-1991, seven days a week, and by email at help@cjdfoundation.org. In the UK the CJD Support Network helpline is 0800 774 7317, open on Tuesdays from 8.30am to 3.30pm and on Wednesdays and Thursdays from 11am to 6pm, with voicemail and a callback form outside those hours. Both are run by people who know this illness.
In other countries, the CJD International Support Alliance keeps a directory of patient associations with websites and email contacts. Support groups by country lists them.
Where does the rest of the site fit?
Understand is the home of the plain language pages. Exposure and safety answers the question families most often ask first, which is whether the illness can spread. Treatment research explained covers what is being studied and what is not yet known.
In the UK, suspected cases are referred to the National CJD Research and Surveillance Unit in Edinburgh or the National Prion Clinic in London, which together form the national care team. A doctor and nurse from these services work with the local team. Families do not have to arrange this, but it is reasonable to ask whether it has happened.
Whatever brought you here, the person to ask about one individual’s symptoms, tests or results is the treating team.
Explore
- A doctor suspects CJD or prion diseaseA doctor suspects CJD or prion disease: what the tests are, who should be involved, and the next three steps for a family waiting for answers.
- After a deathAfter a death from CJD or prion disease: the post mortem and why it is offered, the funeral, and where grief support is, in three calm steps.
- I am worried about exposureWorried about exposure to CJD or prions, from a past operation, a transfusion, food, deer or contact with someone ill? What is known, and the next three steps.
- Prion disease runs in my familyPrion disease runs in your family: what inherited prion disease is, why genetic counselling comes first, and the next three steps, without pressure to test.
- Someone I love has been diagnosedSomeone you love has been diagnosed with CJD or prion disease: the next three steps, who is meant to help, and who to phone, in plain words.
- Urgent support and who to callUrgent support for families facing CJD or prion disease: who to call today, in the UK and the United States, and where to turn if you are in crisis.