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
Navigating the Maze of Rare Conditions: Why Sharing Our Stories Matters
In this deeply personal episode, join Amy as she shares her harrowing journey through a labyrinth of medical mysteries that span years of misdiagnoses and ineffective treatments. From the initial shocking symptoms following a float tank session to the life-altering diagnosis of Ehlers-Danlos Syndrome and related complications, Amy's story is one of resilience and relentless pursuit of answers. Delve into her experiences with sudden paralysis, chronic pain, mental health crises, and the ongoing struggles with the healthcare system's overlook of rare conditions. Her narrative sheds light on the critical need for awareness, proper diagnosis, and the emotional toll of living with misunderstood illnesses. Amy's voice brings to life the silent battles many face but few hear about, calling for a shift in how we perceive and treat the unseen.
Hashtags:
#RareDiseaseAwareness #MedicalMystery
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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