Creutzfeldt-Jakob (Prion) disease
There's noproven cure for Creutzfeldt-Jakob disease (CJD), but clinical studies areunder way at the National Prion Clinic to investigate possible treatments.
At present, treatment involves trying to keep the person as comfortable as possible and reducing symptoms through the use of medicines.
For example, psychological symptoms of CJD, such as Generalised anxiety disorder and depression ,can be treated with sedatives and antidepressants ,and muscle jerksor tremors can be treated withmedicines such as clonazepam and sodium valproate.
Any pain experienced can be relieved using powerful opiate-based painkillers.
Many people with CJD draw up an advance directive (also known as an advance decision ). An advance directive is where a person makes their treatment preferences known in advance, in case they can't communicate their decisions later because they're too ill.
Issues that can be covered by an advance directive include:
Your care team can provide more advice about making an advance directive.
If a person is thought to have CJD, they're referred to the National Care Team for CJD in the National CJD Research and Surveillance Unit in Edinburgh,or theNational Prion Clinic in London, for diagnosis and care.
A doctor and nurse from these services will be assigned to liaise with local services,including the person's GP, social worker, physiotherapist and occupational therapist.
Specialist teams are available to diagnose and offer clinical and emotional support to patients and their families, and to work alongside the local care team. A local care team may include doctors and nurses, occupational therapists, dietitians, incontinence advisers and social workers.
For more information about how some of the specific symptoms of CJD may be treated see:
As CJD progresses, people with the condition will need significant nursing care and practical support.
As well as help with feeding, washing and mobility, some people may also need help urinating. Acatheter (a tube that's inserted into the bladder and used to drain urine) is often required.
Many people will also have problems swallowing, so they may have to be given nutrition and fluids through a feeding tube.
It may be possible to treat people with CJD at home, depending on the progression and severity of the condition.
Caring for someone with CJD can be distressing and difficult to cope with, so many carers prefer to use the specialist services of a hospital or hospice.
, end of life care and your own emotional wellbeing if you're caring for someone else.
Find out about the different types of Creutzfeldt-Jakob disease (CJD), and what causes the condition and how it's treated.
Read about the symptoms of Creutzfeldt-Jakob disease (CJD) which vary depending on the type. In sporadic CJD they are neurological and in variant CJD they are psychological.
Find out what causes Creutzfeldt-Jakob disease (CJD). The main cause of all types of CJD is a build-up of an abnormal infectious protein in the brain called a prion.
Read about the tests used to investigate Creutzfeldt-Jakob disease (CJD) including MRI, EEG and lumbar puncture. A brain biopsy is the only way to confirm a diagnosis of CJD.
Find out what can be done for a person with Creutzfeldt-Jakob disease (CJD) to reduce their symptoms.
Read about the strict controls that are in place to prevent variant Creutzfeldt-Jakob disease (CJD) spreading through the food supply and blood transfusions.