FTD - Navigating The Cr*p

Facing The Future with Familial FTD: Helen’s Story


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In this episode, Beth is joined by Helen, whose family has been profoundly affected by familial FTD.

Helen first experienced the disease through her aunt, and later through her mum. When her mum was diagnosed, Helen was confronted with the reality that FTD could be genetic and that it might also shape her own future.


With honesty and courage, Helen shares what it was like growing up in a close, loving family, watching both her mum and aunt change through FTD, and eventually making the difficult decision to undergo genetic testing herself.


She talks about the long and emotional process of counselling, the moment she received her results and how she and her husband began planning for the future while raising their young son.


If you need support with anything discussed in this podcast, visit alzheimers.org.uk for the dementia support line.

To learn more about dementia research and how you can get involved, email [email protected].



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FTD - Navigating The Cr*pBy Beth Jones