Unpacking the Gift of Life
Unpacking the Gift of Life is a place to explore the rare kidney disease and transplant journey with hope and honesty. With your host Valen Keefer, we’re here to connect, uplift, and empower those living with rare disease.
Unpacking the Gift of Life
Care for the Rare: Real Caregivers Share Support Strategies for Rare Kidney Disease (Part 2)
Caregiving is a shared journey. Valen is joined by mother-daughter duo Linda and Autosomal Recessive Polycystic Kidney Disease and Congenital Hepatic Fibrosis (ARPKD/CHF) patient Claire Bevec, along with Valen’s husband Noah, to talk about the evolving dynamics of caregiving. Hear advice and strategies for navigating the caregiving journey and transition from pediatric to adult care with compassion and resilience.
About Your Host
Valen Keefer – Patient Advocacy Leader, Health Educator, & Strategic Consultant, www.valenkeefer.com
Additional Resources
- ARPKD Facebook Support Group, https://m.facebook.com/groups/ARPKD/?ref=share&mibextid=wwXIfr
- Harmony for Hope, https://harmony4hope.org/
- “Self Care While Being a Caregiver” – featuring Noah Keefer on Otsuka’s Patient Education Network, https://www.otsukapatiented.com/kidney-disease/community-stories/self-care-while-being-caregiver
- “The Crucial Care Partner” – Episode 5 of Letters of Hope, a docuseries on the trials and triumphs of transplantation, https://valenkeefer.com/letters-of-hope-docuseries
- “Understanding ARPKD” – PKD Foundation, https://pkdcure.org/about-the-disease/arpkd/
- “Welcome to Holland” – Emily Perl Kingsley, https://www.emilyperlkingsley.com/welcome-to-holland