Fatherhood and Caring in Rare Disease Families
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Fatherhood and Caring in Rare Disease Families
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On this episode of Catalyst Convos, hosts Amy Grover and Carrie Ostrea are joined by two rare disease caregivers, Mark and Bill, who open up about their journeys as fathers, husbands, and unwavering supporters of their families. Mark shares his experiences navigating life alongside his wife, who lives with Lambert-Eaton myasthenic syndrome (LEMS), while Bill speaks about raising a son with Duchenne muscular dystrophy (DMD), with both his wife and daughter as manifesting carriers.
They reflect on how caregiving reshaped their identities, how they’ve learned to advocate for their loved ones in the healthcare system, and what it means to create space while still being protective. From wrestling with insurance barriers to redefining masculinity through vulnerability, this is a conversation about showing up in ways that aren’t often talked about and why more dads need a seat at the table.
Tune in to hear a raw, honest, and deeply important perspective from men in caregiving roles within rare disease families.
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