DiscoverHidden Diagnoses Impact: Unveiling EDS, CCI, and other undiagnosed or underdiagnosed conditions
Hidden Diagnoses Impact: Unveiling EDS, CCI, and other undiagnosed or underdiagnosed conditions
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Hidden Diagnoses Impact: Unveiling EDS, CCI, and other undiagnosed or underdiagnosed conditions

Author: Amy Wang-Hiller

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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 "Occult Awareness" lies in its compelling storytelling, as guests share their personal 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, "Occult Awareness" empowers those affected by these conditions and educates the broader public, healthcare providers, and policymakers about the critical need for awareness and the nuances of medical care for occult disabilities. Each episode aims to educate, inspire, and advocate for change, contributing to a more informed and compassionate society.

11 Episodes
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Send us a textIn this episode of Hidden Diagnosis Impact, Christina shares her powerful journey living with Ehlers-Danlos Syndrome (EDS) and the complexities of navigating a healthcare system that often overlooks rare conditions. Christina opens up about her early symptoms, the pain of repeated misdiagnoses, and the emotional toll of being dismissed and mischaracterized by doctors. Her story sheds light on the physical challenges of EDS, from spinal instability to brainstem complications...
Send us a textIn 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 Pers...
Send us a textIn this episode of the Occult Awareness podcast, we sit down with Arlen, who shares her compelling journey through the healthcare system with multiple rare genetic conditions, including Ehlers-Danlos Syndrome (EDS). Arlen's story is a testament to resilience, advocacy, and the challenges faced by those with rare and complex medical conditions.Early Symptoms and Misdiagnoses:Arlen’s lifelong battle with various symptoms started in childhood.Initial misdiagnoses and the impact on ...
Send us a textJoin us for this enlightening bonus episode of Occult Awareness, where we delve deeper into the complexities of the healthcare system. After our last in-depth discussion, our guest shared some additional critical insights that we couldn't keep to ourselves.In this episode, we explore the controversial world of alternative and complementary treatments, the role of financial gain in medical research, and the promising yet restricted field of stem cell therapy. Discover the real ch...
Send us a textIn this episode of Occult Awareness, we welcome Mark, a licensed professional counselor and health advocate, to discuss the complex interplay between chronic illness, trauma, and holistic health approaches. Mark shares his journey as both a professional and a patient, offering valuable insights into the limitations of the medical model and the importance of viewing health holistically.Key Discussion Points:Mark's journey into counseling and his experiences with chronic health is...
Send us a textIn Episode 5, Part 2 of Occult Awareness, Dr. Hillary Merry continues her deep dive into the critical issues of Craniocervical Instability (CCI) and systemic medical neglect. Part 2 of the conversation, Dr. Hillary Merry continues to uncover the hidden flaws in the medical system, focusing on how often critical tests are dismissed, and the consequences this has on patients with conditions like Craniocervical Instability (CCI). She highlights the systemic negligence that lea...
Send us a textIn this episode of Occult Awareness, we explore the personal and professional life of Dr. Hilary Merry, a veterinarian who has bravely faced the challenges of living with Ehlers-Danlos Syndrome (EDS) and multiple comorbidities. In part one, Dr. Merry shares her journey from experiencing early symptoms as a child to receiving a formal diagnosis at the age of 27. She opens up about the struggles and triumphs of navigating a healthcare system that often overlooks complex condi...
Send us a textIn this episode of the "Occult Awareness" podcast, host Amy dives deeper into Aella's journey, exploring the complex and often frustrating realities of living with a chronic illness. From misdiagnoses and systemic healthcare issues to the everyday challenges faced by those with Ehlers-Danlos Syndrome (EDS) and other connective tissue disorders, Aella shares her experiences with raw honesty and courage.Join us as we discuss:The impact of stigmatization and misdiagnosis in the hea...
Send us a textIn this gripping episode of Occult Awareness, Aella Askew bravely shares her harrowing journey through a maze of undiagnosed chronic illnesses and medical gaslighting.From a childhood filled with pain and dismissed symptoms to a life-altering spine injury, Aella's resilience shines through as she fights for answers and validation. Join us as we delve into the complexities of invisible illnesses, the power of self-advocacy, and the importance of finding community and support.&nbs...
Send us a textMarika emphasizes the importance of grieving and finding joy in daily life despite the difficulties. The hope is that the conversation will help others feel less alone and inspire better care in the medical field.In this episode of the "Occult Awareness" podcast, host Amy Wang-Hiller interviews Marika, who shares her journey navigating complex health conditions. Marika discusses living with Loeys-Dietz syndrome (LDS), a connective tissue disorder with various symptoms like hyper...
Send us a textIn 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, ...