معلومات عن هذا البودكاست 🔗
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.
تردد التحديث:
every 23 days
متوسط طول الصوت:
60 minutes
مقابلات الضيوف
لديها رعاة
الإنجليزية
الولايات المتحدة
38 حلقة
منذ 17 إبريل، 2024
episodic
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In this episode of *Rarely Discussed*, we sit down with Milton Cubas, one of fewer than 10 people ever diagnosed with ALAD Porphyria (ADP), one of the rarest forms of porphyria in the world. After his first attack as a child in Colombia, Milton endured years of recurring attacks, debilitating neuro…
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الحلقات السابقة 🔗
April Trebelhorn was 28, pregnant, and caring for her hospitalized son when an Acute Intermittent Porphyria attack showed its ugly face. Today she's a Family Nurse Practitioner, porphyria specialist, and advocate with the American Porphyria Foundation — turning her story into hope for the next gene…
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 Nation…
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 un…
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 servi…
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…
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, stric…
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…
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 …
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 special…
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