Rare Living with Giusiana

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

Pediatric Pain Programs with Exposing Pain Programs

February 22, 2025 • 48 mins

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

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Fluoroquinolone Toxicity with Talia Smith

January 25, 2025 • 31 mins

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 ...

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Lack of Autonomy in Chronic Illness

January 6, 2025 • 18 mins

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...

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Rare Living: Introduction

December 17, 2024 • 34 secs

Episodes will be released monthly, w...

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