Rare Living with Giusiana

Giusiana
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Rare Living with Giusiana explores the challenges, triumphs, and realities of life with rare diseases and chronic illnesses. Join host Giusiana as she sits down with inspiring guest speakers—patients, caregivers, advocates, and experts—to share heartfelt stories, insights, and resources. Together, they navigate the complexities of living rare, building understanding, and fostering community.

Episodes

  1. 02/22/2025

    Pediatric Pain Programs with Exposing Pain Programs

    Todays episode is a little different, joining us anonymously is the person behind Exposing Pain Programs. Exposing Pain Programs is dedicated to speaking our truth about harm done by pain rehab programs. #youdidntcureus To find support for survivors, resources to make an informed decision, or to share your story, follow Exposing Pain Programs here You can also follow Giusiana here

    48 min

  2. 01/25/2025

    Fluoroquinolone Toxicity with Talia Smith

    Some mic difficulties, but the show must go on. Today I met with Talia to discuss her experience with floxxing, or fluoroquinolone toxicity. Talia Smith is a wife and step-mother; she had a career that she loved, had an active/healthy lifestyle and was the primary caretaker of her husband, who is a disabled Veteran. In April 2021, she was disabled by 3 pills of a fluoroquinolone antibiotic, called Ciprofloxacin, and ended up on Hospice, weighing only 60 pounds. She fought her way off Hospice and onto Palliative care. Talia still requires 24/7 care for her survival, but has become an advocate for fluoroquinolone toxicity syndrome via her social media platforms, awareness campaigns, videos and interviews. You can find Talia, sign the petition, and learn more about fluoroquinolone toxicity here Rare Living with Giusiana explores the challenges, triumphs, and realities of life with rare diseases and chronic illness. Join host Giusiana as she sits down with inspiring guest speakers - patients, caregivers, advocates, and experts - to share heartfelt stories, insights, and resources. Together, they navigate the complexities of living rare, building understanding, and fostering community.On todays solo episode, we dive into a not-so-fun side of life with chronic illness, and how the lack of autonomy over your own body and the feeling of being less than human can impact our mental wellbeing. Episodes will be released monthly, with some bonus episodes along the way. We can't wait to have you walk alongside us and learn to Live Rare. You can find Giusiana on Instagram and TikTok ⁠here

    31 min

  3. 01/06/2025

    Lack of Autonomy in Chronic Illness

    Rare Living with Giusiana explores the challenges, triumphs, and realities of life with rare diseases and chronic illness. Join host Giusiana as she sits down with inspiring guest speakers - patients, caregivers, advocates, and experts - to share heartfelt stories, insights, and resources. Together, they navigate the complexities of living rare, building understanding, and fostering community. On todays solo episode, we dive into a not-so-fun side of life with chronic illness, and how the lack of autonomy over your own body and the feeling of being less than human can impact our mental wellbeing. Episodes will be released monthly, with some bonus episodes along the way. We can't wait to have you walk alongside us and learn to Live Rare. You can find Giusiana on Instagram and TikTok here

    18 min

  4. 12/17/2024

    Rare Living: Introduction

    Rare Living with Giusiana explores the challenges, triumphs, and realities of life with rare diseases and chronic illnesses. Join host Giusiana as she sits down with inspiring guest speakers—patients, caregivers, advocates, and experts—to share heartfelt stories, insights, and resources. Together, they navigate the complexities of living rare, building understanding, and fostering community. Episodes will be released monthly, with some bonus episodes along the way. We can’t wait to have you walk alongside us and learn to Live Rare. You can find Giusiana on Instagram and TikTok here: https://linktr.ee/giusianahttps://linktr.ee/giusiana

    1 min
  • 4 Episodes

About

Rare Living with Giusiana explores the challenges, triumphs, and realities of life with rare diseases and chronic illnesses. Join host Giusiana as she sits down with inspiring guest speakers—patients, caregivers, advocates, and experts—to share heartfelt stories, insights, and resources. Together, they navigate the complexities of living rare, building understanding, and fostering community.

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