Living with Risk

I worked for many years supporting people with inherited prion disease (a genetic form of CJD) and was struck by the enormity of living with not only the knowledge that you may develop the progressive and untreatable illness that you have just witnessed in a parent, sibling or other relative, but that your children may also be at risk.  How do you manage this information?  What do you tell who?  How do you cope with finding your partner is at risk? This is not straightforward and different people manage things very differently.  In an attempt to raise awareness of the issues facing people with inherited prion disease in their family, a qualitative, longitudinal study in one family is in progress.  The first instalment of results was published in a poster at the conference Neuroprion 12 in Amsterdam, May 2012.  This can be viewed by clicking the link below:

Embracing the Unwelcome Stranger: pilot study to understand and define the experience and support needs of people living with the risk of inherited prion disease

For peer support in living with the risk of inherited prion disease please visit

Keeping well in the holistic sense of the term is something that may influence the onset of a genetic illness. Consider reading the work of Norman Doidge (2015) on neuroplasticity: The Brain’s Way of Healing: stories of remarkable Recoveries and Discoveries. He reports three studies on genetically modified mice injected with Huntington’s disease. Those mice that were free to roam and exercise at will were healthy for ten years longer in human terms than mice who were either prevented from exercising, or forced to exercise. Very interesting findings in my view ……