About Caring for Rare: Stories of Rare Metabolic Disorders
Nutricia’s Caring for Rare explores what life is like with a rare metabolic disorder – from difficulties at diagnosis to adapting to condition management to thriving in everyday joys. Episodes feature personal experiences with rare inborn errors of metabolism like phenylketonuria (PKU). These stories may not be representative of all rare metabolic disorders, and this podcast in no way replaces the guidance and supervision of metabolic healthcare professionals. Guests on Caring for Rare are compensated for their time. Brought to you by Nutricia North America.
4: Life with homocystinuria (HCU): Colbie, Cayle and parents Cole and Sarah
Siblings Colbie (11) and Cayle (9) were diagnosed with homocystinuria (HCU), a rare inborn error of metabolism, when they were young children. With their parents Cole and Sarah, they share their feelings on HCU. Cole and Sarah talk about the early days of adjusting to diet management and their journey to accepting HCU and focusing on all that Colbie and Cayle can do.
This episode was produced by Alletta Cooper, Ulrike Reichert, and Kate Miley for Nutricia North America. The music featured in this episode is Look Inside by Sirus Music (https://urldefense.com/v3/__https:/www.shutterstock.com/music/track-397931-look-inside__;!!OUGTln_Lrg!CBB-NC4xV8HqswCcQDJ8MrLVyvXGXwrfia6gWKCgJVGOcARmsTIx5vopQMuoAyLLWmN6%24), Endless Story by Nick Petrov (https://urldefense.com/v3/__https:/www.shutterstock.com/music/track-495604-endless-story__;!!OUGTln_Lrg!CBB-NC4xV8HqswCcQDJ8MrLVyvXGXwrfia6gWKCgJVGOcARmsTIx5vopQMuoA8oK4Pma%24), and Everything's OK by Porter Productions (https://urldefense.com/v3/__https:/www.shutterstock.com/music/track-489866-everything).
Contact us at NutritionServices@nutricia.com (mailto:NutritionServices@nutricia.com) or NutriciaMetabolics.com (http://NutriciaMetabolics.com)
17 Nov 2021
3: Growing up with MSUD – an interview with 8-year-old Carter Coleman & his parents
Carter, an eight-year-old living with maple syrup urine disease (MSUD), and his parents open up about their experiences with this rare inborn error of metabolism.
28 Sept 2021
1: Caring for Rare Trailer
Nutricia’s Caring for Rare explores what life is like with a rare metabolic disorder
18 Sept 2021
2: Raising young children with PKU - an interview with Lacy Shaffer and Julie Bolduc DeFilippo
On this episode of Caring for Rare, Lacy and Julie, who didn’t previously know each other, share their experiences of raising young children with PKU.
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