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.

Episodes

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

March 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 Miley for Nutricia North America. ...

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

January 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 emotional toll, to being short-order cooks, to em...

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

December 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 was produced by Alletta Coope...

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

November 17, 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. Mom and dad, Jordann and Andre, discuss coming to terms with diagnosis, watching Carter reach important milestones, and what they appreciate most about Carter, who looks forward to playing football, having a house one day, and continuing to “do fun stuff!”

...

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1: Caring for Rare Trailer

September 28, 2021 • 59 secs

These stories may not ...

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

September 18, 2021 • 12 mins

Moms Lacy and Julie: Raising children with phenylketonuria (PKU)

Forming community is essential for many people and caregivers living with rare metabolic disorders. In this episode, moms Lacy and Julie, who didn’t know each other previously, tell their stories of bringing up children with phenylketonuria (PKU). They cover navigating their children’s special diets with family and friends, dealing with feelings of iso...

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Caring for Rare: Stories of Rare Metabolic Disorders

Episodes

.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}6: Parents of children and children with PKU, MSUD and HCU share how they talk about their metabolic disorder.

.css-r6mb8g{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:1;overflow:hidden;}5: Parents of children with PKU, MSUD and HCU share their experiences with a special low protein diet

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

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

1: Caring for Rare Trailer

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

Popular Podcasts

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

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