Vitafriends Voices

What does it really mean to live well with PKU? In this deeply personal episode, two of the most passionate voices in the PKU community, Richard Farquhar and Kevin Alexander, come together for a rare, face to face conversation that spans continents, challenges, and everything in between. Despite living on opposite sides of the world, Richard and Kevin have built a close friendship rooted in shared experience, mutual understanding, and an unwavering commitment to advocacy.Subsribe for more community stories and practical tips for living with a metabolic disorder. Follow our Instagram @Vitafriends_Voices to be the first to hear about future episodes!Want to dive deeper into Kevin's advocacy journey? This conversation builds on two pieces he has shared previously;In 'The Emotional Toll of Rare Disease Advocacy', Kevin opens up for the first time about the hidden burdens advocates carry, available as both a podcast episode and article: https://pkujournal.com/the-emotional-toll-of-rare-disease-advocacy/And in 'Self Care is Advocacy', written following a candid exchange between Kevin and Richard on social media, he explores the emotional weight of holding other people's stories and why self care isn't optional for advocates: https://pkujournal.com/self-care-is-advocacy-advice-to-rare-disease-advocates/All products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.

In this insightful episode, Annie shares her personal story of growing up with PKU while actively participating in sports. Now in her twenties, she is pursuing a PhD project designed to benefit both herself and others with PKU. She discusses how her research aims to study the combined impact of nutrition and exercise on the health of those with PKU, and her goal to develop evidence-based interventions that will improve quality of life for the community. All products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.

Bianca joins us from Australia and shares her wisdom and advice for young teens struggling with a disorder of protein metabolism. She emphasises the importance of support from family, friends and partners and encourages listeners to embrace life and all its possibilities. All products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.

Aoife shares her heartfelt experience as a new mother to a baby diagnosed with PKU, discussing the challenges and triumphs of the first year. An honest and frank insight to other new parents into what she thinks the (bright) future will hold.For more information on navigating a PKU diagnosis, visit https://www.vitafriendspku.co.uk/navigating-a-pku-diagnosisAll products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.