Going through diagnosis

Trish relates the difficulties of her experiences of the diagnostic journey for her husband’s amyloidosis, particularly all the things she wishes she’d had the courage to ask during consultations in hindsight. Both her and husband Patrick were initially confused, bewildered and numbed by the prognosis and the short lifespan it projected. They acknowledge the danger of going down the Google rabbit hole in a desperate attempt to understand what they were dealing with, which made things even worse for them. In the time they were waiting for Patrick’s National Amyloidosis Centre appointment it felt like purgatory, like their whole world was falling apart. Just having someone to turn to, to reassure them that they were chasing it up, would have made a world of difference.

 

After being diagnosed with ATTR amyloidosis Pat, and his wife Trish were initially ‘shell-shocked’. In these videos they discuss the diagnosis, living with ATTR, how it feels to be a wife and also at times feel like a caregiver, and how they decided to tell their daughter, Gabby, about this hereditary condition.

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