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CJD
A guide for patients and carers
Introduction
Written by Dr Richard Knight, Consultant Neurologist, and Dr Sophie Petit-Zeman, Consultant in Public Understanding of Science and Medicine, with contributions from Ms Pamela Kimber HDCR, Dr Philippa Edwards, CJD Incidents Panel, the CJD Support Network and the Human BSE Foundation.
In August and September 2001, the Brain and Spine Foundation, with support from the CJD Support Network of the Alzheimer’s Society, surveyed the experiences and needs of relatives and carers of those with Creutzfeldt-Jakob disease (CJD). Our aim was to find out what you want to know about the condition, and this booklet is the result. While people in the early stages of the illness may themselves find it helpful, you are probably reading it because you are a friend, relative or carer of someone with CJD.
In August and September 2001, the Brain and Spine Foundation, with support from the CJD Support Network of the Alzheimer’s Society, surveyed the experiences and needs of relatives and carers of those with Creutzfeldt-Jakob disease (CJD). Our aim was to find out what you want to know about the condition, and this booklet is the result. While people in the early stages of the illness may themselves find it helpful, you are probably reading it because you are a friend, relative or carer of someone with CJD.
A number of people raised concerns about the support available from their GP, and we have therefore also written an update on CJD for GPs, so that they will be better able to help their patients, and support carers, and feel confident to answer your questions.
Many people also said that it was difficult to understand what nonmedical support was available, such as that from social services or state benefits.These issues – how you can put together the right package of care - are covered here too, and details given for organisations which can help further.
Everyone who answered our questionnaire wanted the booklet to contain clear information about the physical and behavioural changes that occur in CJD and the outlook for people with it. However, some suggested that this be in a clearly marked section so that it could be avoided by those who prefer not to receive all this information at once.
The section called What are the symptoms of CJD, and how does the disease progress? contains information about disease progression in clearly marked paragraphs.The section called What support is available for carers of people with CJD? contains information about the advanced stages of the disease that you may find distressing.
Finally, it is important to stress that all forms of CJD are very rare. Many people who fear that they, a friend or a relative are affected will not, following medical investigation, turn out to have the condition. It has a complex mix of signs and symptoms, all of which can occur in other conditions.
Note: words printed in bold are explained in the glossary.
Many people also said that it was difficult to understand what nonmedical support was available, such as that from social services or state benefits.These issues – how you can put together the right package of care - are covered here too, and details given for organisations which can help further.
Everyone who answered our questionnaire wanted the booklet to contain clear information about the physical and behavioural changes that occur in CJD and the outlook for people with it. However, some suggested that this be in a clearly marked section so that it could be avoided by those who prefer not to receive all this information at once.
The section called What are the symptoms of CJD, and how does the disease progress? contains information about disease progression in clearly marked paragraphs.The section called What support is available for carers of people with CJD? contains information about the advanced stages of the disease that you may find distressing.
Finally, it is important to stress that all forms of CJD are very rare. Many people who fear that they, a friend or a relative are affected will not, following medical investigation, turn out to have the condition. It has a complex mix of signs and symptoms, all of which can occur in other conditions.
Note: words printed in bold are explained in the glossary.
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Contents
- Introduction
- What is CJD?
- What are the different types of CJD?
- What precautions do I need to take to stop CJD spreading?
- Can I get CJD from eating meat?
- How does the brain of someone with CJD differ from normal?
- What causes CJD?
- What does "genetic susceptibility" to CJD mean?
- Is there a genetic test for CJD?
- Can CJD be avoided, and is it catching?
- What are the symptoms of CJD, and how does the disease progress?
- How is CJD diagnosed?
- Are other conditions easily mistaken for CJD?
- How is CJD treated?
- What impact can CJD have on families of poepl with the condition?
- What support is available for carers of people with CJD?
- Conclusion
- Organisations that may be able to help
