Welcome to Rarely Discussed

We had the opportunity to chat with the one and only Tasha Alicea as she talked about her story, her struggles, and everything that has paved the way to who she is today as someone living with Hereditary Coproporphyria. This is her Story. 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 ===== 0:00 Podcast Intro 2:43 Meet Tasha Alicea 4:18 How Moving States Led To Diagnosis 6:34 The Breaking Point 8:03 Doctor Testing And Diagnosis 11:52 Genetic Test Results 13:08 The Feeling After Diagnosis 13:58 Tasha's Son's Diagnosis 17:02 Trying To Navigate Porphyria 18:36 Rare Disease And The Grieving Process 19:51 Hospital Experiences With Porphyria 24:54 What Is Your Routine For Avoiding Triggers? 29:12 Taking Trips And Figuring It Out 30:00 Doing Things To "Feel Normal" 31:40 Distractions From The Pain 35:54 Living Life And Figuring It Out 38:20 Having A Good Support System Example 40:00 Is it Worth The Pain? 44:45 How Do You Cope Having A Rare Disease? 49:30 Finding Community 53:30 Outro ===== #porphyria #raredisease #rarediseasepodcast __________ This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.

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