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. ...

Mark as Played

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...

Mark as Played

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...

Mark as Played

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

November 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. 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!”

...

Mark as Played

1: Caring for Rare Trailer

September 28, 2021 • 59 secs

These stories may not ...

Mark as Played

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...

Mark as Played

Popular Podcasts

On Purpose with Jay Shetty

I’m Jay Shetty host of On Purpose the worlds #1 Mental Health podcast and I’m so grateful you found us. I started this podcast 5 years ago to invite you into conversations and workshops that are designed to help make you happier, healthier and more healed. I believe that when you (yes you) feel seen, heard and understood you’re able to deal with relationship struggles, work challenges and life’s ups and downs with more ease and grace. I interview experts, celebrities, thought leaders and athletes so that we can grow our mindset, build better habits and uncover a side of them we’ve never seen before. New episodes every Monday and Friday. Your support means the world to me and I don’t take it for granted — click the follow button and leave a review to help us spread the love with On Purpose. I can’t wait for you to listen to your first or 500th episode!

Stuff You Should Know

If you've ever wanted to know about champagne, satanism, the Stonewall Uprising, chaos theory, LSD, El Nino, true crime and Rosa Parks, then look no further. Josh and Chuck have you covered.

Dateline NBC

Current and classic episodes, featuring compelling true-crime mysteries, powerful documentaries and in-depth investigations. Follow now to get the latest episodes of Dateline NBC completely free, or subscribe to Dateline Premium for ad-free listening and exclusive bonus content: DatelinePremium.com

My Favorite Murder with Karen Kilgariff and Georgia Hardstark

My Favorite Murder is a true crime comedy podcast hosted by Karen Kilgariff and Georgia Hardstark. Each week, Karen and Georgia share compelling true crimes and hometown stories from friends and listeners. Since MFM launched in January of 2016, Karen and Georgia have shared their lifelong interest in true crime and have covered stories of infamous serial killers like the Night Stalker, mysterious cold cases, captivating cults, incredible survivor stories and important events from history like the Tulsa race massacre of 1921. My Favorite Murder is part of the Exactly Right podcast network that provides a platform for bold, creative voices to bring to life provocative, entertaining and relatable stories for audiences everywhere. The Exactly Right roster of podcasts covers a variety of topics including historic true crime, comedic interviews and news, science, pop culture and more. Podcasts on the network include Buried Bones with Kate Winkler Dawson and Paul Holes, That's Messed Up: An SVU Podcast, This Podcast Will Kill You, Bananas and more.

The Breakfast Club

The World's Most Dangerous Morning Show, The Breakfast Club, With DJ Envy, Jess Hilarious, And Charlamagne Tha God!

Advertise With Us

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