Jessica Bean is a medicine access advocate, international speaker, consultant and empowerment coach for young women living with chronic illness.
Informed at age 21 that she would need a double lung transplant to survive the damage caused to her lungs by the genetic condition cystic fibrosis, Jessica fought hard to change her trajectory. Over a decade later, Jessica continues to breathe through her own lungs and live a life beyond her diagnosis.
“If I wanted a different future for myself, I had to become my own warrior. I was the one and only person who could change my health. No matter how much anybody loved or cared for me, nobody could do it for me. I had to take control and own it.”
In this episode, Jess and I talk about what cystic fibrosis is, what it was like to grow up with the condition and what advice she'd give to parents who receive a CF diagnosis for their child. We also discuss the importance of intuition, advocating for our own healthcare and finding the right treatment path for us. After a surprise visit from Jess' dog, we chat about the healing power of our furry friends, and the richness and perspective that comes with facing life challenges.
Jessica’s experience as one of the first cystic fibrosis patients to benefit from genetic modulation therapy, gave her an intimate understanding of the emerging challenges faced by patients in the age of personalised medicine. This has inspired a mission to ensure patients and their values are represented in decision making across the health eco system.
Jessica’s work has been recognised by global health leaders and brands, including Bupa for whom she was a finalist in their 2016 health influencer awards. Jessica is currently chair person for Patient Voice Initiative (Australia), sits on both The Australian Genomic Health Alliance Community Advisory Group and the Queensland Genomics Community Advisory Group, chairs the Cystic Fibrosis Consumer Engagement Group at The Prince Charles Hospital and is an Ambassador for the international Hello My Name Is campaign.
For more information about Jessica and her work please visit:
Also mentioned in this episode:
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