Rebecca Middleton: The patient’s voice

"I know the power of a word, I know the power of a story, I know
the power of a phrase, and language really is so meaningful and
so valuable. […] Every data point has a face, there is a person
there, it's not just a number, it's not just a code. Principle
number two, treat people as you would like to be treated."


On today's episode, Chris Wigley is joined by Rebecca Middleton,
Vice Chair of the Participant Panel and founder of Hereditary
Brain Aneurysm Support (HBA Support). They discuss Rebecca's
clinical and genetic journey, her participation in the 100,000
genome project and what that meant for her. They also discuss the
difficulty of having a rare disease, how the lack of information
can cause great loneliness and uncertainty and why Rebecca opened
HBA Support in response. 


Having lost family to brain aneurysms, and having undergone
surgery for an aneurysm herself, Rebecca recently founded HBA
Support and is establishing a patient-centred organisation to
support patients and families living with familial brain aneurysm
syndrome. For more information click here:
https://hbasupport.org/