Four people from families affected by inherited prion disease will be walking with me along the Thames from Hammersmith Bridge to Hampton Court on Saturday 26th June. An attempt to do this '3 legged' will be made, and we aim to complete the walk together from beginning to end to symbolise the support generated by activity in community, a fundamental human need. Any sponsorship of this event will be donated to the CJD Support Network to generate support for people at risk of inherited prion disease and their families. Practical help in small ways, such as a birthday party for young children of affected parents, and events to develop peer support are examples of ways any money raised might be spent.
In every case this illness is devastating. Living with the knowledge you are at risk of developing the disease in the future is very stressful, and has a profound impact on all members of the family. Coping styles vary greatly from person to person. Consider:
- beginning to develop symptoms that as a child you watched your parents die from;
- testing positive and knowing you will develop the illness in the future;
- testing negative when your brother or sister tests positive;
- losing several members of your family to the same illness;
- being a constant carer from childhood through adulthood.
More information about inherited CJD and other forms of prion disease can be found on the CJD Support Network website, and for an account on video by Professor John Collinge, MRC Prion Unit please click here. For personal accounts of living with this disease click here.
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