How to Raise a Rare Disease Family
Rare disease is a family affair. What does it take to raise a rare family when the financial and emotional challenges begin to add up?
Welcome to Rare Resilience, a podcast about rare disease and mental health. Hosted by psychologist and father Dr. Al Freedman, we explore stories of people who have lived with and survived rare disease, and the challenges they overcame along the way.
In this episode, we are joined by Roberta Smith. A mother to a daughter with alagille syndrome, she’s also the President of the Alagille Syndrome Alliance. Roberta explains the difficulties she faced as a single mom raising two girls, one living with a rare disease. She explains why surviving rare disease as a family ultimately comes down to a choice – between resilience and victimhood.
Thank you so much for listening! If you like what you hear, remember to subscribe to Rare Resilience wherever you get your podcasts.
Rare Resilience is produced by BloodStream Media. For more information or to start a podcast of your own, visit bloodstreammedia.com.
A message from Dr. Al:
To all the rare families out there watching or listening, remember. Anything is possible. Never give up. And we’re all in this together.