In a very different episode, we chat with our very own Jay Roche and his wife Sarah about the family’s long connection with Manchester Genetics Department and how different things have shaped their story.
We chat about making conscious decisions about both small and big aspects of our lives, from parenting to careers. We hear about how we all perceive ‘ordinary’ differently, how we recognise the different types of both visible and invisible support around every single one of us, and a grown man hiding in a suitcase!
In this episode Jay and Sarah are talking about their experience of Huntington’s disease, including contact with their genetics centre. If you would like to access more information and support about Huntington’s Disease in your area please follow the links below:
https://www.bsgm.org.uk/public-patients-families
http://eurohuntington.org/huntingtons-disease-associations/
https://hdsa.org/about-hdsa/locate-resources/
More about Huntington’s Disease:
Huntington’s disease (often shortened to HD) is a genetic condition that causes involuntary movements (fidgety type movements sometimes referred to as ‘chorea’) and changes in thinking and concentration as well as behaviour changes such as irritability and low mood.
Symptoms of Huntington’s disease usually develop between ages 30 and 50, but can also occur earlier or later. Each child of an affected parent has a 50% risk of inheriting either the normal or faulty copy of the HD gene.** this risk is the same for men and women.
HD is slowly progressive over a number of years. Whilst there is much that can be done to help manage the symptoms associated with HD, there is not currently a way of stopping it. There is, however progress being made in disease modifying treatment trials for HD.
** If a person inherits the faulty copy of the HD gene he or she will go on to develop the condition at some point in the future. If a person inherits the normal copy of the HD gene, he or she will not develop the condition and cannot in turn pass it on to their children.
Available from the 29th December across all popular platforms such as Apple Podcasts, Spotify, Google Podcasts, Stitcher, iHeart Radio, TuneIn, Alexa, Overcast, PocketCasts, Castro, Castbox, and Podchaser. Also available on our YouTube Channel!