3: Finding What Works For You | Living With Erythropoietic Protoporphyria (EPP)

We had the opportunity to chat with George Hodder and learn more about his story as someone who lives with the rare disease called Erythropoietic Protoporphyria (EPP). George talks about finding things that work for you, having a balance, ways he's coping, family and so much more. This story relates on so many levels to people dealing with rare diseases whether it's EPP or not there is value in this episode for you! Read George Hodder's Story: https://porphyriafoundation.org/for-patients/member-stories/erythropoietic-protoporphyria-and-x-linked-protoporphyria/george-hodder/ 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: / 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 ===== 00:00 Let's Welcome George Hodder 00:45 George's Story Living With EPP 02:37 Early Childhood Experiences 04:13 The Results of The Diagnosis 08:30 The Process After Diagnosis 10:40 Finding Balance 13:50 Stubbornness and Opening Up 14:40 Coping With EPP 21:15 Having Something To Work Toward 27:00 Working With Limitations 29:45 Having Kids With A Rare Disease 33:20 What Would You Say To Someone In Your Shoes 36:00 What No One Talks About With EPP 42:00 Drug Trial Experiences 49:00 The Affect of The Sun 52:00 Having A Support System 58:00 Spreading Awareness ===== #rarelydiscussedpodcast #ErythropoieticProtoporphyria #epp __________ This podcast is supported by Recordati Rare Diseases. Recordati has no control or influence over the content mentioned in this podcast.