Hidden Diagnoses Impact: Unveiling EDS, CCI & Beyond
Hidden Diagnoses Impact is a podcast that shares stories about medical conditions that often have unknown etiology or causes are idiopathic. It empowers global health advocates and undiagnosed patients by telling their stories, educating the broader public, and discussing the lack of healthcare with health professionals who are rare/undiagnosed patient advocates and allies.
The podcast serves as a beacon of hope and knowledge for individuals navigating the complexities of the often misunderstood realm of hidden or 'occult' medical conditions, such as Occult Tethered Cord and Cervical Cranial Instability (CCI) within the Ehlers-Danlos Syndrome (EDS), and beyond.
Each episode invites listeners into the lives of those who face the daily challenges of seeking accurate diagnoses, battling misperceptions, and often receiving inadequate treatment.
The heart of awareness about hidden diagnoses lies in its compelling storytelling, as guests share their journeys, from the trials of living with undiagnosed symptoms to the triumphs of finding understanding and proper care. Alongside these powerful narratives, the podcast brings expert voices from the medical community to discuss the subtleties of occult conditions, current research, and emerging treatments.
By fostering a community of empathy and advocacy, this podcast empowers individuals affected by underrecognized and disabling conditions while educating healthcare professionals, policymakers, and the broader public on the urgent need for systemic change. Each episode contributes to a growing movement—one that not only informs and inspires but also lays the foundation for broader initiatives led by our emerging nonprofit. Through storytelling and solidarity, we’re helping to shape a more compassionate, inclusive future in healthcare.
Hidden Diagnoses Impact: Unveiling EDS, CCI & 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:
http://www.creativeinclusion.betterworld.org/donate
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