Hidden Diagnoses Impact: Unveiling EDS, CCI, and Beyond
Hidden Diagnoses Impact shares stories from people living with EDS, CCI/AAI, tethered cord, brainstem compression, and other complex neurological conditions that are frequently delayed or dismissed in medical care.
Hosted by violinist and advocate Amy Wang-Hiller, the podcast explores medical gaslighting, trauma-informed care, disability identity, and rebuilding life after diagnosis. Through conversations with patients, clinicians, and advocates, we transform lived experience into actionable insight and community hope.
Ownership & Support:
Hidden Diagnoses Impact is owned by Wang-Hiller LLC and licensed to InclusiVibe Foundation for presentation and distribution. Podcast sponsorships support InclusiVibe Foundation's charitable mission and are tax-deductible.
Hidden Diagnoses Impact: Unveiling EDS, CCI, and Beyond
Patient Advocacy in Need: Kiera’s Dual Journey as a Public Health Scholar and Patient
In this episode, we welcome Kiera Chan, a public health PhD student and patient advocate who shares her unique journey through the healthcare system. Kiera combines her professional insights and personal experiences to highlight the challenges of navigating complex medical issues, advocating for off-label treatments, and addressing healthcare disparities.
Please listen to her story and practical advice on empowering patients and improving their quality of life.
- Bridging Personal Experience and Professional Insight:
- Kiera offers a rare blend of personal health experiences and professional expertise in public health, allowing her to deeply empathize with patients while providing informed advocacy.
- In-Depth Understanding of Healthcare System Flaws:
- Her academic background enables her to dissect and explain the systemic issues within the healthcare system, making her insights valuable for both patients and policy-makers.
- Research-Driven Advocacy:
- Kiera’s research on patient dismissal and healthcare disparities provides
- Personal Health Journey:
- Kiera shares her own experiences with misdiagnosis, navigating the healthcare system, and advocating for herself, providing relatable content for listeners facing similar struggles.
- Public Health Research:
- She delves into her public health studies, highlighting key findings and their implications for patient care and health policy.
- ·Advocacy Tips and Strategies:
- ·Practical advice on how patients can advocate for themselves, including tips on dealing with healthcare providers, understanding medical records, and accessing support groups.
- ·Future of Healthcare:
- Kiera discusses her vision for the future of healthcare, including the need for more patient advocates and systemic changes to support vulnerable patients.
Please follow us on social media @HiddenDiagnosesImpact, watch the video format on YouTube @hiddendiagnosesimpact
Support this podcast and the mission of our forming nonprofit, which aims to raise awareness of complex neurological conditions like CCI and EDS, uplift disabled artists, and spark systemic change in both medicine and the creative world:
https://inclusivibe.betterworld.org/donate
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