Rarely Discussed

RarelyDiscussed

Welcome to Rarely Discussed, an American Porphyria Foundation Podcast, with your hosts Andrew McManamon and Nicole Castellano. We both have Porphyria, which is a rare disease. As scientifically different as rare diseases can be, we share many similarities on how it affects our lives. We’re here to open the discussion and give the porphyria and rare disease community a safe place to connect, learn and heal. Being rare can feel lonely and isolating, but we’re stronger together.

  1. MAR 20

    34: F-16 Command Pilot TURNED Caregiver For Wife With Porphyria

    In this powerful episode of Rarely Discussed, we sit down with Charles “Digger” Davis—a retired U.S. Air Force Lieutenant Colonel, combat-decorated F-16 Command Pilot, and now full-time caregiver to his wife, Ginger, who lives with Acute Intermittent Porphyria (AIP).After 25 years of military service and 115 combat missions, Digger’s life took an unexpected turn following his own diagnosis of Multiple Sclerosis. Years later, another challenge emerged when his wife Ginger endured nearly 31 years of unexplained pain and misdiagnosis before finally being diagnosed with AIP in 2023.In October 2023, Digger made the life-changing decision to retire completely and become her full-time caregiver—navigating hospital visits, advocating for proper care, and supporting her through a complex and unpredictable rare disease.This episode dives into:• What it truly means to be a caregiver• Navigating the healthcare system with rare disease• Balancing his own MS diagnosis while caring for his wife• The emotional and physical realities families face• The importance of advocacy, persistence, and supportDigger also shares his perspective as a member of the American Porphyria Foundation’s Member Advisory Board, helping guide and support others walking a similar path.Rarely Discussed Podcast 🎙️→Rarely Discussed: https://beacons.ai/rarelydiscussedFOLLOW Rarely Discussed:→YouTube: https://shorturl.at/mtuwO→Instagram: https://shorturl.at/xGHPT→Tik Tok: https://shorturl.at/qEGQZMEET Nicole Castellano:→Nicole's Story: https://t.ly/IsGK7→Facebook: https://shorturl.at/krQZ8→Instagram: https://www.instagram.com/nicowildkat/?hl=enMEET Andrew McManamon:→Andrew's Story: https://t.ly/01JLz→Facebook: https://t.ly/kHuvX→Instagram: https://t.ly/Htuwg→Tik Tok: https://t.ly/eK1bPAmerican Porphyria Foundation:→Website: https://porphyriafoundation.org/→Instagram: https://rb.gy/osvb08→Facebook Group: https://rb.gy/217o99→YouTube Channel: https://rb.gy/9s0kcmDisclaimer:The information shared in this video is intended to raise awareness and provide insight into personal experiences with porphyria and related conditions. It is not intended to be taken as medical advice. Everyone’s health situation is different, and viewers should always consult with a qualified healthcare professional for diagnosis, treatment, and medical guidance tailored to their specific needs.#rarediseases #multiplesclerosis #acuteintermittentporphyria__________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.

    1 hr

  2. MAR 6

    33: Meet the NEW Executive Director of the American Porphyria Foundation: Thomas Pletkovich!

    It’s an absolute honor to welcome Thomas Pletkovich as the new Executive Director of the American Porphyria Foundation (APF). With deep gratitude to Nicole and Desiree for their tireless dedication in positioning APF for continued success, Thomas steps in with a powerful commitment to advancing the Foundation’s mission: improving the lives of individuals and families affected by porphyria through education, research, advocacy, and support.Thomas brings more than 20 years of experience in healthcare, pharma, and rare disease advocacy, having held leadership roles at Pierre Fabre Pharmaceuticals, Syneos Health, Johnson & Johnson, GlaxoSmithKline, and more. His most recent role as Rare Disease Regional Director at Pierre Fabre highlighted his global vision and patient-first approach—qualities he now brings to APF during a critical period of growth. With expertise in drug discovery, patient assistance program expansion, and awareness campaign development, Thomas is prepared to help lead the charge in 2026 and beyond.But it’s not just his professional background that sets him apart—it’s his heart for people. A proud father and grandfather, Thomas is passionate about global travel, the arts, and empowering patient communities to thrive. His leadership is grounded in empathy, advocacy, and a strong desire to see porphyria patients receive the care, visibility, and resources they deserve.Please join us in welcoming Thomas to the APF family. The future of porphyria care is in very capable hands.Rarely Discussed Podcast 🎙️→Rarely Discussed: https://beacons.ai/rarelydiscussedFOLLOW Rarely Discussed:→YouTube: https://shorturl.at/mtuwO→Instagram: https://shorturl.at/xGHPT→Tik Tok: https://shorturl.at/qEGQZMEET Nicole Castellano:→Nicole's Story: https://t.ly/IsGK7→Facebook: https://shorturl.at/krQZ8→Instagram: https://www.instagram.com/nicowildkat/?hl=enMEET Andrew McManamon:→Andrew's Story: https://t.ly/01JLz→Facebook: https://t.ly/kHuvX→Instagram: https://t.ly/Htuwg→Tik Tok: https://t.ly/eK1bPAmerican Porphyria Foundation:→Website: https://porphyriafoundation.org/→Instagram: https://rb.gy/osvb08→Facebook Group: https://rb.gy/217o99→YouTube Channel: https://rb.gy/9s0kcmDisclaimer:The information shared in this video is intended to raise awareness and provide insight into personal experiences with porphyria and related conditions. It is not intended to be taken as medical advice. Everyone’s health situation is different, and viewers should always consult with a qualified healthcare professional for diagnosis, treatment, and medical guidance tailored to their specific needs.#americanporphyriafoundation #apof #porphyria __________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.

    34 min

  3. FEB 20

    32: THIS is what it's like living with Porphyria Cutanea Tarda (PCT) With Carrie Hunter

    Today’s guest is Carrie Hunter, a powerhouse of resilience, leadership, and advocacy. Diagnosed with genetic Porphyria Cutanea Tarda (PCT) after years of uncertainty, Carrie endured 2 years of worsening symptoms before receiving a diagnosis at age 33. Her journey: filled with hospital visits, strict lifestyle changes, and immense personal strength, has only fueled her drive to help others. Now, the CEO and Founder of It’s Not That Serious, she leads a women’s empowerment brand and storytelling platform built to connect, uplift, and celebrate women through intentional content and thoughtfully curated products. Carrie brings more than two decades of executive leadership across tech, communications and construction. She’s a mom, a mentor, and a passionate advocate for women in construction, mental health awareness and diversity across the AEC ecosystem. She is living proof that porphyria may change your path, but it doesn’t define your potential. Carrie, welcome to Rarely Discussed. Subscribe to Rarely Discussed for more real stories from patients, caregivers, and doctors navigating the rare disease world.Rarely Discussed Podcast 🎙️→Rarely Discussed: https://beacons.ai/rarelydiscussedFOLLOW Rarely Discussed:→YouTube: https://shorturl.at/mtuwO→Instagram: https://shorturl.at/xGHPT→Tik Tok: https://shorturl.at/qEGQZMEET Nicole Castellano:→Nicole's Story: https://t.ly/IsGK7→Facebook: https://shorturl.at/krQZ8→Instagram: https://www.instagram.com/nicowildkat/?hl=enMEET Andrew McManamon:→Andrew's Story: https://t.ly/01JLz→Facebook: https://t.ly/kHuvX→Instagram: https://t.ly/Htuwg→Tik Tok: https://t.ly/eK1bPAmerican Porphyria Foundation:→Website: https://porphyriafoundation.org/→Instagram: https://rb.gy/osvb08→Facebook Group: https://rb.gy/217o99→YouTube Channel: https://rb.gy/9s0kcmDisclaimer:The information shared in this video is intended to raise awareness and provide insight into personal experiences with porphyria and related conditions. It is not intended to be taken as medical advice. Everyone’s health situation is different, and viewers should always consult with a qualified healthcare professional for diagnosis, treatment, and medical guidance tailored to their specific needs. #porphyria #americanporphyriafoundation__________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.

    48 min

  4. FEB 6

    31: 30 Years of Misdiagnosis: Ginger Davis' Fight Against Acute Intermittent Porphyria

    In this deeply personal episode of Rarely Discussed, we sit down with Ginger Davis, who endured nearly three decades of pain, confusion, and misdiagnosis before finally learning she had Acute Intermittent Porphyria (AIP). Her first attack struck at just 13 years old, and it wasn’t until age 42 that she received the correct diagnosis—after countless ER visits, unanswered questions, and years of suffering. Today, Ginger shares how AIP transformed her life, how she manages it now, and how she and her husband Charles—who lives with MS—remain resilient and positive. Together, they use social media as a platform to spread awareness and hope to others in the rare disease community.💜 This is a story of perseverance, partnership, and powerful advocacy.Subscribe to Rarely Discussed for more real stories from patients, caregivers, and doctors navigating the rare disease world.Rarely Discussed Podcast 🎙️→Rarely Discussed: https://beacons.ai/rarelydiscussedFOLLOW Rarely Discussed:→YouTube: https://shorturl.at/mtuwO→Instagram: https://shorturl.at/xGHPT→Tik Tok: https://shorturl.at/qEGQZMEET Nicole Castellano:→Nicole's Story: https://t.ly/IsGK7→Facebook: https://shorturl.at/krQZ8→Instagram: https://www.instagram.com/nicowildkat/?hl=enMEET Andrew McManamon:→Andrew's Story: https://t.ly/01JLz→Facebook: https://t.ly/kHuvX→Instagram: https://t.ly/Htuwg→Tik Tok: https://t.ly/eK1bPAmerican Porphyria Foundation:→Website: https://porphyriafoundation.org/→Instagram: https://rb.gy/osvb08→Facebook Group: https://rb.gy/217o99→YouTube Channel: https://rb.gy/9s0kcmDisclaimer:The information shared in this video is intended to raise awareness and provide insight into personal experiences with porphyria and related conditions. It is not intended to be taken as medical advice. Everyone’s health situation is different, and viewers should always consult with a qualified healthcare professional for diagnosis, treatment, and medical guidance tailored to their specific needs.#gingerdavis #porphyria #americanporphyriafoundation__________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.

    1h 11m

  5. JAN 23

    30: What I Wish Everyone Knew About Porphyria! (Here's Why)

    What I Wish Everyone Knew About Porphyria! - Today’s episode is a little different—just you and me, having an honest conversation about porphyria. But this isn’t just about symptoms or statistics. It’s about what I wish every person—patients, caregivers, doctors, friends—understood about this rare disease. We’re talking misdiagnosis, the emotional toll, how advocacy truly saves lives, why community is your lifeline, and what life looks like after a diagnosis. Whether you’re newly diagnosed, supporting someone who is, or just trying to make sense of it all—this episode will leave you with clarity, connection, and actionable ways to move forward. Let’s get into it.If you’re new here, welcome. My name is Andrew McManamon, and this is the Rarely Discussed podcast. But today, it’s just me. No guest, no panel, no clinical breakdown. Just an honest conversation—one that’s been building in my head for awhile. I want to talk about porphyria, but not in the way it’s usually explained. Not the textbook definition. Not the sterile medical language most of us have Googled at two in the morning while lying in pain. I want to talk about what I genuinely wish everyone knew about this disease. Patients. Caregivers. Doctors. Friends. Employers. And even the people who might stumble across this episode and wonder why a podcast about a rare disease even exists. This conversation is for you.Rarely Discussed Podcast 🎙️→Rarely Discussed: https://beacons.ai/rarelydiscussedFOLLOW Rarely Discussed:→YouTube: https://shorturl.at/mtuwO→Instagram: https://shorturl.at/xGHPT→Tik Tok: https://shorturl.at/qEGQZMEET Nicole Castellano:→Nicole's Story: https://t.ly/IsGK7→Facebook: https://shorturl.at/krQZ8→Instagram: https://www.instagram.com/nicowildkat/?hl=enMEET Andrew McManamon:→Andrew's Story: https://t.ly/01JLz→Facebook: https://t.ly/kHuvX→Instagram: https://t.ly/Htuwg→Tik Tok: https://t.ly/eK1bPAmerican Porphyria Foundation:→Website: https://porphyriafoundation.org/→Instagram: https://rb.gy/osvb08→Facebook Group: https://rb.gy/217o99→YouTube Channel: https://rb.gy/9s0kcmDisclaimer:The information shared in this video is intended to raise awareness and provide insight into personal experiences with porphyria and related conditions. It is not intended to be taken as medical advice. Everyone’s health situation is different, and viewers should always consult with a qualified healthcare professional for diagnosis, treatment, and medical guidance tailored to their specific needs.__________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.

    16 min

  6. 12/05/2025

    29: Dr. Bo Zhao Reveals the Truth About Porphyria Treatment

    Today’s guest is Dr. Bo Zhao, a nationally recognized hematologist and physician-scientist who brings more than two decades of experience in clinical medicine, biomedical research, and leadership to the field of rare diseases. He currently practices at Virginia Oncology Associates, where he specializes in hematologic disorders and serves on the organization’s joint policy board. Dr. Zhao has developed a deep clinical interest in porphyria, and today integrates cutting-edge diagnostics and personalized care strategies for both acute and cutaneous forms of the disease.He has trained at leading institutions including Mount Sinai, Cleveland Clinic, and MD Anderson, and has held academic and clinical leadership roles throughout his career. His research spans gene mutations, tumor biology, and translational therapeutics, with numerous peer-reviewed publications and patents to his name. In addition to serving as the Vice President of the Chinese American Hematologist and Oncologist Network (CAHON), Dr. Zhao was recently appointed to the Scientific Advisory Board of the American Porphyria Foundation, where he lends both his clinical insight and scientific rigor to advancing porphyria care.Today, he joins us to discuss the complexities of porphyria diagnosis, how modern hematology is evolving in rare disease care, and why collaboration between researchers, clinicians, and patients is key to improving outcomes.Dr. Zhao, welcome to Rarely Discussed.Rarely Discussed Podcast 🎙️→Rarely Discussed: https://beacons.ai/rarelydiscussedFOLLOW Rarely Discussed:→YouTube: https://shorturl.at/mtuwO→Instagram: https://shorturl.at/xGHPT→Tik Tok: https://shorturl.at/qEGQZMEET Nicole Castellano:→Nicole's Story: https://t.ly/IsGK7→Facebook: https://shorturl.at/krQZ8→Instagram: https://www.instagram.com/nicowildkat/?hl=enMEET Andrew McManamon:→Andrew's Story: https://t.ly/01JLz→Facebook: https://t.ly/kHuvX→Instagram: https://t.ly/Htuwg→Tik Tok: https://t.ly/eK1bPAmerican Porphyria Foundation:→Website: https://porphyriafoundation.org/→Instagram: https://rb.gy/osvb08→Facebook Group: https://rb.gy/217o99→YouTube Channel: https://rb.gy/9s0kcmDisclaimer:The information shared in this video is intended to raise awareness and provide insight into personal experiences with porphyria and related conditions. It is not intended to be taken as medical advice. Everyone’s health situation is different, and viewers should always consult with a qualified healthcare professional for diagnosis, treatment, and medical guidance tailored to their specific needs.#porphyria #rarelydiscussed #porphyriaawareness__________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.Join us in this insightful episode where Dr. Bo Zhao, a dedicated doctor, discusses his journey from oncology to focusing on rare disorders like porphyria. With over 20 years of experience, he shares his commitment to raise awareness and enhance patient empathy within the medical community. Tune in for a compelling conversation about the importance of understanding rare diseases and the impact on patient care! 🎧

    35 min

  7. 11/20/2025

    28: Her Clinical Trials Led To BREAKTHROUGHS For Acute Intermittent Porphyria! | Lakeshia Johnson

    Today on Rarely Discussed, we're honored to welcome Lakeshia Johnson, a courageous advocate who has been living with Acute Intermittent Porphyria (AIP) for over two decades. Diagnosed shortly after high school during what should’ve been an exciting new chapter of her life, Lakeshia’s journey began with excruciating symptoms that puzzled doctors—until a determined surgeon finally uncovered the rare culprit: porphyria. Since then, Lakeshia has volunteered for groundbreaking studies at the University of Texas Medical Branch Porphyria Center in Galveston, Texas, including the Alnylam Study, the Panhematin Study, and the Longitudinal Study. Through the ups and downs of unpredictable attacks and misdiagnoses, Lakeshia has found a deep sense of resilience, purpose, and strength. She’s here today not only to share her powerful story but also to raise awareness for those navigating rare, invisible illnesses. Her message is simple yet profound: we are more than our diagnosis, and life—though challenging—can still be lived with light, faith, and fierce determination.Rarely Discussed Podcast 🎙️→Rarely Discussed: https://beacons.ai/rarelydiscussedFOLLOW Rarely Discussed:→YouTube: https://shorturl.at/mtuwO→Instagram: https://shorturl.at/xGHPT→Tik Tok: https://shorturl.at/qEGQZMEET Nicole Castellano:→Nicole's Story: https://t.ly/IsGK7→Facebook: https://shorturl.at/krQZ8→Instagram: https://www.instagram.com/nicowildkat/?hl=enMEET Andrew McManamon:→Andrew's Story: https://t.ly/01JLz→Facebook: https://t.ly/kHuvX→Instagram: https://t.ly/Htuwg→Tik Tok: https://t.ly/eK1bPAmerican Porphyria Foundation:→Website: https://porphyriafoundation.org/→Instagram: https://rb.gy/osvb08→Facebook Group: https://rb.gy/217o99→YouTube Channel: https://rb.gy/9s0kcmDisclaimer:The information shared in this video is intended to raise awareness and provide insight into personal experiences with porphyria and related conditions. It is not intended to be taken as medical advice. Everyone’s health situation is different, and viewers should always consult with a qualified healthcare professional for diagnosis, treatment, and medical guidance tailored to their specific needs.#lakeishajohnson #porphyria #acuteintermittentporphyria __________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.

    1h 5m

  8. 11/05/2025

    27: What Dr. Robert Sarkany Has To Say About Cutaneous Porphyria Is MINDBLOWING!

    In this episode of Rarely Discussed, we’re joined by world-renowned dermatologist Dr. Robert Sarkany from the UK. As the former head of the Photodermatology Unit at St. John’s Institute of Dermatology, Dr. Sarkany unpacks the complexities of cutaneous porphyrias—how they impact the liver, skin, and a patient’s quality of life. With decades of experience in photodermatology and rare sunlight-sensitive conditions, he walks us through the science, clinical management, and historical evolution of these disorders. Now serving on the Scientific Advisory Board of the American Porphyria Foundation, Dr. Sarkany continues to pioneer awareness and education around these rare diseases. If you or a loved one lives with a cutaneous porphyria like EPP or PCT, this is a must-watch conversation.🎧 Listen in, learn something new, and help us raise awareness.📌 Learn more about porphyria: https://www.porphyriafoundation.org📬 Subscribe for more real stories and expert insights about rare conditions like porphyria.Rarely Discussed Podcast 🎙️→Rarely Discussed: https://beacons.ai/rarelydiscussedFOLLOW Rarely Discussed:→YouTube: https://shorturl.at/mtuwO→Instagram: https://shorturl.at/xGHPT→Tik Tok: https://shorturl.at/qEGQZMEET Nicole Castellano:→Nicole's Story: https://t.ly/IsGK7→Facebook: https://shorturl.at/krQZ8→Instagram: https://www.instagram.com/nicowildkat/?hl=enMEET Andrew McManamon:→Andrew's Story: https://t.ly/01JLz→Facebook: https://t.ly/kHuvX→Instagram: https://t.ly/Htuwg→Tik Tok: https://t.ly/eK1bPAmerican Porphyria Foundation:→Website: https://porphyriafoundation.org/→Instagram: https://rb.gy/osvb08→Facebook Group: https://rb.gy/217o99→YouTube Channel: https://rb.gy/9s0kcmDisclaimer:The information shared in this video is intended to raise awareness and provide insight into personal experiences with porphyria and related conditions. It is not intended to be taken as medical advice. Everyone’s health situation is different, and viewers should always consult with a qualified healthcare professional for diagnosis, treatment, and medical guidance tailored to their specific needs.#cutaneousporphyria #drrobertsarkany #porphyria __________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.

    1h 12m
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5
out of 5
8 Ratings

About

Welcome to Rarely Discussed, an American Porphyria Foundation Podcast, with your hosts Andrew McManamon and Nicole Castellano. We both have Porphyria, which is a rare disease. As scientifically different as rare diseases can be, we share many similarities on how it affects our lives. We’re here to open the discussion and give the porphyria and rare disease community a safe place to connect, learn and heal. Being rare can feel lonely and isolating, but we’re stronger together.

Information

  • Creator
    RarelyDiscussed
  • Years Active
    2024 - 2026
  • Episodes
    34
  • Rating
    Clean
  • Copyright
    © RarelyDiscussed
  • Show Website
    Rarely Discussed