Vitafriends Voices

A Rare Diagnosis of Tyrosinaemia: Lorraine & Harry Spillane on Family Life & Empowerment

41 min · 19. nov. 2025
episode A Rare Diagnosis of Tyrosinaemia: Lorraine & Harry Spillane on Family Life & Empowerment cover

Beskrivelse

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

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Alle episoder

16 episoder

episode PKU & the Holidays Made Easy: Lorraine (@GrowingUpWithPKU) Shares Her Festive Tips cover

PKU & the Holidays Made Easy: Lorraine (@GrowingUpWithPKU) Shares Her Festive Tips

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

17. dec. 202529 min
episode The Role of Patient Organisations: Dietitian Suzanne Ford's Take on Season 2 cover

The Role of Patient Organisations: Dietitian Suzanne Ford's Take on Season 2

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

26. nov. 202536 min
episode A Rare Diagnosis of Tyrosinaemia: Lorraine & Harry Spillane on Family Life & Empowerment cover

A Rare Diagnosis of Tyrosinaemia: Lorraine & Harry Spillane on Family Life & Empowerment

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

19. nov. 202541 min
episode PKU Diet for Life Study: Max and Harald Share a Doctor and Patient's Perspective cover

PKU Diet for Life Study: Max and Harald Share a Doctor and Patient's Perspective

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

12. nov. 202540 min
episode PKU and Travel: Nicole Weber on Life as a Travel Nurse and Low Protein Living cover

PKU and Travel: Nicole Weber on Life as a Travel Nurse and Low Protein Living

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

5. nov. 202523 min