Caring for Rare: Stories of Rare Metabolic Disorders

Mar 18 2022 2

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

Mar 18 2022 14 mins

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 Mil

5: Parents of children with PKU, MSUD and HCU share their experiences with a special low protein diet

Jan 27 2022 13 mins

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 e

4: Life with homocystinuria (HCU): Colbie, Cayle and parents Cole and Sarah

Dec 15 2021 12 mins

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

3: Growing up with MSUD – an interview with 8-year-old Carter Coleman & his parents

Nov 16 2021 12 mins

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.

1: Caring for Rare Trailer

Sep 28 2021

Nutricia’s Caring for Rare explores what life is like with a rare metabolic disorder

2: Raising young children with PKU - an interview with Lacy Shaffer and Julie Bolduc DeFilippo

Sep 18 2021 12 mins

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.