Caring for Rare: Stories of Rare Metabolic Disorders By cover art

Caring for Rare: Stories of Rare Metabolic Disorders

By: Nutricia North America
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  • Summary

  • 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.
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Episodes
  • 6: Parents of children and children with PKU, MSUD and HCU share how they talk about their metabolic disorder.

    6: Parents of children and children with PKU, MSUD and HCU share how they talk about their metabolic disorder.
    Mar 18 2022
    How do you talk to your kid about their metabolic disorder? How do you address having to get blood draws, a different diet and food choices and explain why their circumstances may be different to another child. Listen as our guest parents and their kids share how they deal with such issues in their own way.
    This episode was produced by Alletta Cooper, Ulrike Reichert, and Kate Miley for Nutricia North America. The music featured in this episode Look Inside by Sirus Music, Imaginary Place by L-Ray Music, Endless Story by Nick Petrov AND Everything's OK by Porter Productions
    Contact us at NutritionServices@nutricia.com or NutriciaMetabolics.com
    ©2022 Nutricia North America
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    15 mins
  • 5: Parents of children with PKU, MSUD and HCU share their experiences with a special low protein diet

    5: Parents of children with PKU, MSUD and HCU share their experiences with a special low protein diet
    Jan 27 2022
    Being on a special diet can be difficult not only for the child but for the entire family. Families must learn to measure metabolic formula, realize the fact that their child’s diet will be completely different from their own and that of other siblings, family members and friends. Listen in and hear how four families are navigating the challenges of a low protein diet: From the emotional toll, to being short-order cooks, to embracing their “new normal” and finding ways to make life easier.

    This episode was produced by Alletta Cooper, Ulrike Reichert, and Kate Miley for Nutricia North America. The music featured in this episode Look Inside by Sirus Music, Imaginary Place by L-Ray Music and Endless Story by Nick Petrov
    Contact us at NutritionServices@nutricia.com or NutriciaMetabolics.com
    ©2022 Nutricia North America
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    14 mins
  • 4: Life with homocystinuria (HCU): Colbie, Cayle and parents Cole and Sarah

    4: Life with homocystinuria (HCU): Colbie, Cayle and parents Cole and Sarah
    Dec 15 2021
    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, Endless Story by Nick Petrov, and Everything's OK by Porter Productions.
    Contact us at NutritionServices@nutricia.com or NutriciaMetabolics.com
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    13 mins
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