Podcast Summary: "Bulwark Takes" - The Miraculous Life of Shane DiGiovanna
Episode Details:
- Title: The Miraculous Life of Shane DiGiovanna
- Host: Jim Swift, Senior Editor at The Bulwark
- Guest: Shane DiGiovanna, Cincinnati Resident and Epidermolysis Bullosa (E.B.) Advocate
- Release Date: March 8, 2025
Introduction: Connecting with Shane DiGiovanna
The episode opens with Jim Swift welcoming listeners and introducing Shane DiGiovanna, a dedicated Bulwark Plus subscriber from Cincinnati. Shane's thoughtful email about the escalating chaos within the federal government and its potential impact on healthcare caught Jim's attention, prompting this in-depth conversation.
Notable Quote:
“The news cycle doesn’t slow down, and neither does The Bulwark.”
— Jim Swift [00:00]
Shane's Concerns: Federal Government Chaos and Healthcare
Shane articulate his worries regarding the instability in federal institutions and how this turmoil could jeopardize healthcare services for the most vulnerable populations. He emphasizes concerns about the integrity and funding of medical trials, as well as the potential negative effects on Medicare and Medicaid.
Notable Quote:
“The integrity of medical trials, whether medical trials will even have the funding to go forward.”
— Shane DiGiovanna [01:10]
Living with Epidermolysis Bullosa (E.B.): A Personal Journey
Shane bravely shares his battle with Epidermolysis Bullosa, a rare genetic disorder that causes his skin to be extremely fragile. Born in North Carolina and later moving to Cincinnati due to his father's work, Shane describes the daily challenges of living with E.B., including chronic pain, frequent surgeries, and the constant threat of aggressive skin cancer.
Notable Quotes:
“I am missing a protein called collagen 7, and that acts as the glue between the different layers of the skin.”
— Shane DiGiovanna [03:29]
“Without that glue, my skin is extremely fragile. I have open wounds all over my body.”
— Shane DiGiovanna [03:29]
College Life at Rice University: Overcoming Adversity
Despite his condition, Shane attended Rice University, balancing rigorous academic pursuits with demanding healthcare needs. He recounts the difficulties of setting up a reliable nursing system in Houston and maintaining his independence. His college years were marked by both academic achievements and personal resilience.
Notable Quotes:
“But despite that, I made the most of it. I had a wonderful time in college, graduated with a degree in economics, and I went to a lot of parties, had a lot of fun.”
— Shane DiGiovanna [04:26]
Battling Skin Cancer: A Continuous Struggle
Shane delves into his ongoing fight against skin cancer, a common and aggressive complication of E.B. He details multiple surgeries and treatments, including immunotherapy, which have taken a severe toll on his body. The relentless nature of his condition means each battle leaves him weaker, but Shane remains steadfast in his fight.
Notable Quotes:
“Each cancer just hits me like a truck, and I get weaker and weaker after each cancer.”
— Shane DiGiovanna [09:05]
“It's the price of a Used car a week.”
— Shane DiGiovanna [11:32]
A Passion for Space and Resilience
Shane draws parallels between his personal struggles and space missions, likening his journey to that of Apollo 13 due to the logistical challenges and risks involved. His lifelong love for aviation and space has been a source of inspiration and strength.
Notable Quotes:
“Yes, it was very much like that. It came pretty close to being Apollo 13, let's just say that.”
— Shane DiGiovanna [10:09]
Advocacy for Future Generations: Doggies Friends Charity
Shane is the founder of Doggies Friends, a charity dedicated to providing comfort dogs to children with E.B. Recognizing the profound impact that his own stuffed dog, Doggie, has had on his life, Shane aims to ensure that other children suffering from E.B. receive similar emotional support. His fundraising efforts have successfully raised over $100,000, establishing a lasting legacy to support future patients.
Notable Quotes:
“If Doggies Friends can help even one child as much as Doggie helped me, then all of my suffering will have been worth it.”
— Shane DiGiovanna [24:25]
“Doggy has been my companion my whole life. He's more important to me than just about anything.”
— Shane DiGiovanna [19:48]
Impacting Healthcare Policy and Future Elections
Shane expresses deep concern about the potential privatization and destabilization of key healthcare programs like Medicare, Medicaid, and Social Security. His overarching worry is not just for his generation but for the next, especially regarding access to treatments and research funding for conditions like E.B.
Additionally, Shane discusses his enthusiasm for political engagement, aiming to influence future elections to safeguard healthcare and research funding. Despite personal health battles, he remains committed to advocacy, setting sights on the 2026 midterms.
Notable Quotes:
“The golden dream is a cure. And there's, you know, multiple treatments that are currently in the pipeline in the FDA.”
— Shane DiGiovanna [12:31]
“I want to make it to the 26 elections hopefully we have a better result.”
— Shane DiGiovanna [25:38]
Conclusion: A Legacy of Hope and Resilience
The episode concludes with Jim Swift encouraging listeners to support Doggies Friends and contribute to Shane's mission. Shane's unwavering dedication to improving the lives of children with E.B. and his resilience in the face of relentless health challenges serve as an inspiring testament to human strength and the impact one individual can have on a community.
Notable Quote:
“If you have a stuffed animal that you can, that you can, that, you know, you can love and cherish and provide comfort…”
— Shane DiGiovanna [20:17]
Support Shane and Doggies Friends: Listeners are invited to contribute to Doggies Friends through the provided link in the podcast description. Even small donations can make a significant difference, providing comfort and hope to children battling E.B.
Final Thoughts: This episode of Bulwark Takes not only sheds light on the harrowing realities of living with Epidermolysis Bullosa but also highlights the remarkable resilience and altruism of Shane DiGiovanna. His story is a powerful reminder of the impact individual advocacy can have on advancing medical research and supporting vulnerable populations.