If the person you are caring for is in a medical emergency, call your local emergency number now. The rest of this page is for the other kind of urgent: the day when you cannot do this alone any longer.
Who can I phone today?
In the United States, the CJD Foundation helpline is 1-800-659-1991, seven days a week, and help@cjdfoundation.org by email. It offers referrals and support to families and carers.
In the UK, the CJD Support Network helpline is 0800 774 7317. It is open on Tuesdays from 8.30am to 3.30pm and on Wednesdays and Thursdays from 11am to 6pm. Outside those hours you can leave a voicemail or ask for a callback through the form on its website, and you can email support@cjdsupport.co.uk.
In other countries, Support groups by country lists the patient associations in the directory kept by the CJD International Support Alliance, and Countries has the national services.
If you are in crisis yourself
The CJD Support Network says plainly that it does not provide crisis support, and points to services that do. In the UK the Samaritans are on 116 123 at any hour, or jo@samaritans.org for a reply within 24 hours; the Welsh language line is 0808 164 0123. Shout, a crisis text line, answers texts of SHOUT to 85258. Childline, for anyone under 19, is on 0800 1111. In the United States, the hospice team caring for the person can connect families to counselling, and the CJD Foundation helpline can point to local services.
Carers of people with prion disease carry a great deal in a short time. Needing help with that is ordinary.
The next three steps
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Make one call. Pick the helpline for your country above and say what is happening. The people who answer have heard it before.
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Ask the care team for out of hours contact and for respite. In the UK, a doctor and nurse from the national prion services work with the local team, and the NHS points families to carers’ breaks and respite care. In the United States, hospice teams can be involved early, bringing equipment and people. Ask who to call at night and what respite is available this week.
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Find the page that fits. Someone I love has been diagnosed sets out the first steps after a diagnosis, A doctor suspects CJD covers the waiting before one, and Grief and bereavement is there for after. The Start here page lists every route.
Helpline hours and numbers change. The sources below were checked on the date shown, and each organisation’s own website has the current details.