Caring for Rare: Stories of Rare Metabolic Disorders
✓

Caring for Rare: Stories of Rare Metabolic Disorders

ABOUT THIS PODCAST 🔗

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. 
Health & Fitness
Kids & Family
Update frequency:
every 40 days
Average audio length:
11 minutes
English
United States
6 episodes
since Sept. 18, 2021
episodic
Use API to fetch this podcast in JSON

LATEST EPISODE 🔗

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.

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…
00:14:37
SHARE
SAVE

SEARCH PAST EPISODES

Search past episodes of Caring for Rare: Stories of Rare Metabolic Disorders.
Embed this search bar to your website

PREVIOUS EPISODES

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

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 hea…
00:13:40
SHARE
SAVE
4: Life with homocystinuria (HCU): Colbie, Cayle and parents Cole and Sarah

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 jour…
00:12:56
SHARE
SAVE
3: Growing up with MSUD – an interview with 8-year-old Carter Coleman & his parents

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. Mom and dad, Jordann and Andre, discuss coming to terms with diagnosis, watching Carter reach important milestones, and what they apprec…
00:12:12
SHARE
SAVE
1: Caring for Rare Trailer

1: Caring for Rare Trailer

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). Listen-in o…
00:00:59
SHARE
SAVE
2: Raising young children with PKU - an interview with Lacy Shaffer and Julie Bolduc DeFilippo

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

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 phenylke…
00:12:25
SHARE
SAVE
You have seen all episodes of this podcast
Disclaimer: The podcast and artwork embedded on this page are from Nutricia North America, which is the property of its owner and not affiliated with or endorsed by Listen Notes, Inc.
PODCAST SEARCH ENGINE
You can use our website to search 3,826,623 podcasts and 196,124,220 episodes by people, places, or topics.
If I have seen further than others, it is by listening to podcasts and standing upon the shoulders of giants.  ‐ Isaac "Llamacorn" Newton

RECOMMENDATIONS

Use API to fetch this podcast