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.

Join us for a special festive bonus episode of VitaFriends Voices featuring Lorraine, the inspiring voice behind the popular Instagram account @GrowingUpWithPKU. Lorraine shares her personal experience of managing her teenage daughter Hannah’s PKU during the holiday season, including navigating festive meals and ensuring Hannah never misses out on the joy of Christmas.

Subscribe 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!

All products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.

#PKU #Phenylketonuria #DisordersOfProteinMetabolism #RareDisease #LowProteinDiet #Vitaflo #VitafriendsVoices #Holidays #FestiveSeason

Dietitian & Advisor to the NSPKU, Suzanne Ford, wraps up season 2 and explores how patient organisations can support individuals and families living with a metabolic disorder. In this episode, we discuss challenges, education, peer connection, and how individuals can get involved in ways that genuinely help. This conversation will resonate with newly diagnosed and long time community members alike.

Subscribe 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!

All products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.

#PKU #Phenylketonuria #TYR #Tyrosinaemia #HCU #Homocystinuria #DisordersOfProteinMetabolism #RareDisease #LowProteinDiet #Vitaflo #VitafriendsVoices

Tyrosinaemia (TYR) is incredibly rare, and when your child receives a diagnosis, everything changes. Lorraine and Harry Spillane reflect on their experiences in the early days, building routines that work and staying positive as a family.

Subscribe 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!

All products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.

#Tyrosinaemia #Tyrosinemia #TYR #DisordersOfProteinMetabolism #RareDisease #LowProteinDiet #Vitaflo #VitafriendsVoices

Dr Maximilian Pichler and Harald Schossmann, an adult with PKU, discuss the Austrian 'Back to Clinic' study and initiative. This episode covers Harald's lived experience of returning to the PKU diet, as well as a healthcare professional’s evidence based view and explanation of the study's findings.

Subscribe 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!

All products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.

#PKU #Phenylketonuria #DisordersOfProteinMetabolism #PKUDiet #ReturnToDiet #RareDisease #LowProteinDiet #Vitaflo #VitafriendsVoices

Travel and PKU definitely can coexist. In this episode, Nicole Weber shares practical strategies for flying, eating out and staying on plan, all while building confidence and community on the road. Perfect for anyone managing phenylketonuria (PKU) or any other metabolic disorder who wants unique tips that actually work.

Subscribe 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!

All products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.

#PKU #Phenylketonuria #DisordersOfProteinMetabolism #RareDisease #LowProteinDiet #Vitaflo #VitafriendsVoices

Living with homocystinuria (HCU) has been a journey for Éimear. In this inspiring episode, she talks openly about acceptance, community, and turning personal experience into effective advocacy.

Subscribe 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!

All products and medications referred to in the podcast must be used under medical supervision.

For more information, please speak to your healthcare professional.

#HCU #Homocystinuria #DisordersOfProteinMetabolism #RareDisease #LowProteinDiet #Vitaflo #VitafriendsVoices

A candid conversation on maternal PKU: from pre conception planning to daily management, and the often overlooked role of partner support. Helen and Steve share what helped, what didn’t, and how love and teamwork made all the difference.

Subscribe 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!

All products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.

#MaternalPKU #PKU #Phenylketonuria #DisordersOfProteinMetabolism #RareDisease #LowProteinDiet #Vitaflo #VitafriendsVoices

Many adults with PKU consider returning to diet, but few talk about it so openly. Stuart Sumner shares what triggered this lifestyle change, the challenges faced and the practical steps he took. In this uplifting episode, Stuart also shares his experience of innovative drug therapies and finding his PKU community.

Subscribe 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!

All products and medications referred to in the podcast must be used under medical supervision. For more information, please speak to your healthcare professional.

#PKU #Phenylketonuria #DisordersOfProteinMetabolism #PKUDiet #ReturnToDiet #BH4 #RareDisease #LowProteinDiet #Vitaflo #VitafriendsVoices

In this special bonus episode, we sit down with Daragh and Wendy Nolan, a mother-son duo who share their unique experiences of living with Daragh’s Phenylketonuria (PKU).

Join us as they delve into the dynamics of their family life, including the challenges and joys of managing PKU alongside Daragh's older brother, Fionn, who does not have the condition.

With a mix of heartfelt stories and humorous anecdotes, Daragh and Wendy reflect on the past as well as their recent journey as ambassadors for Vitaflo Ireland, highlighting how this role has not only empowered them but also strengthened their family bond.