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.
Rarely Discussed
Claim This Podcastby RarelyDiscussed
5.0(14 reviews)
36 episodes
Updated Bi-weekly
Accepts GuestsHas SponsorsLocation 🇺🇸
58
Podcast Authority
BetaFairBased on show quality, social media presence, reviews, charts, and more
Quality46
Social94
YouTube76
Engagement51
Podcast Overview
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.
Language
🇺🇲
Publishing Since
4/17/2024
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Podcast Authority
BetaFairBased on show quality, social media presence, reviews, charts, and more
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YouTube76
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23 episodes over 1.4 years
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Recent Episodes
April 29, 2026
36: Global Porphyria Expert ON: The Hidden Reality of Porphyria Patients
<p>In this episode of Rarely Discussed, we sit down with Dr. Penny Stein, one of the leading global experts in porphyria care and research. As a Consultant in Haematological Medicine at King’s College Hospital in London, Dr. Stein specializes in acute porphyrias and plays a critical role in the National Acute Porphyria Service (NAPS)—caring for patients with some of the most complex and severe cases.Dr. Stein’s impact extends far beyond the UK. Through her work with the International Porphyria Network (IPNET), she collaborates with physicians worldwide to develop clinical guidelines and improve outcomes for patients living with porphyria. She also supports organizations like the British Porphyria Foundation and the American Porphyria Foundation, helping bridge the gap between research, care, and patient advocacy.In this conversation, we explore:• How she became a leading porphyria expert• The biggest advancements in diagnosis and treatment• What the future holds for porphyria therapies• Her experience consulting with doctors around the world• And even the fascinating historical connection between porphyria and vampire/werewolf myths💜 Whether you're a patient, caregiver, or healthcare professional, this episode offers rare insight into one of the most misunderstood conditions in medicine.🎧 Subscribe to Rarely Discussed for more real conversations with patients, caregivers, and global experts in rare disease.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 #porphyriapodcast #americanporphyriafoundation __________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.</p>
April 15, 2026
35: Wheel of Fortune Contestant Shares Her Rare Disease Journey (Acute Intermittent Porphyria))
<p>In this powerful episode of Rarely Discussed, we sit down with Vonda Ulfig to share her incredible journey from medical mystery to life-changing diagnosis.In 2017, Vonda spent nearly two months in and out of the hospital with unexplained symptoms, leaving doctors searching for answers. It wasn’t until someone asked a simple but critical question—“Have you tested her for Acute Intermittent Porphyria?”—that everything changed. That moment led to her diagnosis and ultimately saved her life through treatment with Panhematin.Since then, Vonda has not only regained control of her health but has gone on to earn her Doctorate in Business Administration in 2019, receive multiple professional certifications, and continue building a life centered around family, resilience, and balance. As a wife, mother, and professional, she shares what it truly looks like to live with AIP—and thrive.🎡 From surviving a life-threatening condition to even appearing on Wheel of Fortune, Vonda’s story is a powerful reminder that diagnosis is not the end—it’s a new beginning.💜 This episode is for anyone navigating rare disease, searching for answers, or learning how to live beyond diagnosis.Subscribe to Rarely Discussed for more real stories from patients, caregivers, and doctors in the rare disease community.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 #porphyria #acuteintermittentporphyria __________This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.</p>
March 20, 2026
34: F-16 Command Pilot TURNED Caregiver For Wife With Porphyria
<p>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.</p>
36 total episodes available
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NANCY POMETTA
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Michelle Capon
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