Welcome to the first episode of the Rarely Discussed Podcast: An American Porphyria Foundation Podcast, with your hosts Andrew McManamon and Nicole Castellano. We both have porphyria, a rare disease. We want 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 together, we are stronger. There are 300 million people around the world that live with rare diseases who share many similarities. Let’s learn and heal together as we share our personal journeys and have meaningful interviews with porphyria and rare disease experts and families impacted by porphyria and rare diseases. We’ll talk diagnosis, treatment, misdiagnosis, managing daily life tips, ways to cope physically, mentally and emotionally and everything rare. Rarely Discussed Podcast 🎙️ →Rarely Discussed: https://beacons.ai/rarelydiscussed FOLLOW Rarely Discussed: →YouTube: https://shorturl.at/mtuwO →Instagram: https://shorturl.at/xGHPT →Tik Tok: https://shorturl.at/qEGQZ MEET Nicole Castellano: →Nicole's Story: https://t.ly/IsGK7 →Facebook: https://shorturl.at/krQZ8 →Instagram: https://www.instagram.com/nicowildkat/ MEET Andrew McManamon: →Andrew's Story: https://t.ly/01JLz →Facebook: https://t.ly/kHuvX →Instagram: https://t.ly/Htuwg →Tik Tok: https://t.ly/eK1bP American Porphyria Foundation: →Website: https://porphyriafoundation.org/ →Instagram: https://rb.gy/osvb08 →Facebook Group: https://rb.gy/217o99 →YouTube Channel: https://rb.gy/9s0kcm
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0:00 Rarely Discussed Podcast
3:47 What Is Porphyria?
4:11 Why Did The Podcast Start?11:10 Why Spread Awareness
16:01 Why Community Is Important
17:15 Comparing Life Before Porphyria19:16 Not Letting It Define You
20:43 Leaning on Awareness21:59 It's Not One Size Fits All
26:44 Comparison Is The Thief Of Joy
28:24 Taking Car Of Yourself
35:32 What You Wish You Knew Before
38:42 Our Goal To Lower Diagnosis Time
44:34 Grieving Your Former Life
51:59 Making The Most Of What You Can
53:44 Never Stop Learning
55:05 Advocate For Yourself55:34 Thanks For Listening!
56:02 Conclusion
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