4: A Caregivers Perspective On Rare Disease | Keeping Balance In Chaos & Feeling Helpless

A Caregivers Perspective On Rare Disease | Keeping Balance In Chaos - In this episode of Rarely Discussed, we decided to take on Porphyria and Rare diseases in the perspective of someone who is a caregiver and the hardships that come with being the support system for a spouse, and how finding balance amidst the "chaos" is crucial to keeping a relationship thriving.

Warren Hudson has been a MASSIVE part of the American Porphyria Foundation for a very long time, jumping in headfirst when his former spouse was diagnosed with Acute Intermittent Porphyria, and what his perspective looked like as someone seeing a loved one in constant pain.

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