In 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. Christina has redefined recovery, seeing it as a continuous process of adaptation and self-care rather than a cure. 

Highlights: 

YouTube full interview: 

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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.
  
  

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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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In 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 her daily life and education.
  
  
• Living with Ehlers-Danlos Syndrome:
  • Detailed symptoms and the progressive nature of EDS.
  • The impact of EDS on Arlen’s mobility and daily activities.
  
  
• Complex Comorbidities:
  • The discovery of additional conditions like myalgic encephalomyelitis (ME), POTS, and others.
  • The interconnectedness of these conditions and their compounded effects on health.
  
  
• Navigating Treatment and Care:
  • The struggle to find knowledgeable and compassionate healthcare providers.
  • The importance of a supportive medical team and the role of international healthcare systems.
  
  
• Challenges in the Healthcare System Outside of the U.S and in the U.S.:
  • More time spent on patients but Lack of Knowledge in Complex Conditions  
  • Difficulty with getting care in hospital settings without insurance. 
  
  
• Personal Advocacy and Community Support:
  • Arlen’s efforts to raise awareness about EDS and related conditions.
  • The significance of community and support networks in managing chronic illnesses.
  
  

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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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Join 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 challenges faced by patients seeking innovative treatments and the systemic barriers that hinder progress.

📌 Key Topics Covered:
- The potential and limitations of alternative cancer treatments.
- The financial motivations behind medical research and treatments.
- Personal stories highlighting the impact of systemic healthcare issues.
- The debate around stem cell therapy and its accessibility.

🌟 Special Guest: Mark Metallica shares his profound experiences and perspectives on navigating a profit-driven healthcare system.

Support the show

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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In 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 issues.
• The role of holistic approaches in managing chronic illness.
• Understanding the medical model and its limitations.
• The impact of trauma on physical and mental health.
• The importance of looking at the body and mind as interconnected systems.
• Challenges faced by patients with undiagnosed or misdiagnosed conditions.
• The need for greater collaboration and open-mindedness in the healthcare field.

This episode aims to illuminate the often-overlooked aspects of patient care and advocate for a more integrative approach to health and wellness.

Join us for an enlightening conversation that bridges the gap between traditional medical practices and holistic health philosophies.

Support the show

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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In 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 leads to misdiagnosis and even tragic outcomes, sharing stories of patients who have been failed by the healthcare system.

Key points discussed in this episode include:

• The pervasive game of telephone in medical record-keeping.
• The systemic issues cause doctors to avoid certain tests.
• Real-life impacts of dismissing patient symptoms.
• Dr. Merry’s personal motivation and advocacy work.

This eye-opening episode is a must-listen for anyone interested in understanding the deep-seated issues within our healthcare system and the importance of advocating for unheard voices.

Support the show

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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In 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 conditions, offering listeners a rare glimpse into the realities faced by those with invisible illnesses.

Additionally, Dr. Merry provides unique insights from her veterinary profession, highlighting parallels and contrasts between diagnosing complex conditions in animals versus humans.

• Introduction to Dr. Hilary Merry and her medical background
• Early symptoms and childhood experiences with undiagnosed EDS
• The long path to diagnosis and the impact on her personal and professional life
• Navigating the healthcare system: struggles with being heard and believed
• The role of comorbidities in complicating diagnosis and treatment
• The psychological toll of living with a chronic, invisible illness
• Advocacy and the importance of self-education and persistence in seeking care
• The intersection of veterinary and human medicine in understanding complex conditions
  • How veterinary medicine approaches diagnostic challenges
  • Comparisons between veterinary and human diagnostic processes
  • Insights from veterinary practice that could benefit human healthcare
  
  
• Advice for others facing similar health journeys and the significance of support networks

Tune in to hear Dr. Merry's inspiring story and gain insights into the intricacies of managing life with EDS and other complex health conditions, enriched by her dual perspective as both a patient and a veterinary professional.

Support the show

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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Thank you for your support!

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In 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 healthcare system
• The importance of advocacy and self-advocacy for chronic illness patients
• Aella's personal experiences with various medical professionals and therapies
• The struggle for accessible housing and adequate support programs
• The necessity for better understanding and care for chronic illnesses

This episode not only sheds light on the systemic issues within healthcare but also highlights the resilience and determination of individuals like Aella. Tune in for an insightful conversation that aims to inspire and inform both patients and healthcare professionals alike.

Support the show

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

Please leave your review. Your feedback is so valuable to us! And it will help us reach more listeners like you.

Thank you for your support!

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In 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. 

• Childhood and the Circus 
  • Aella Askew, a woman with Ehlers-Danlos syndrome (EDS) and other chronic illnesses, shares her lifelong struggle with pain and medical invalidation. 
  • Aella's journey took an unexpected turn when she joined the circus, where she found a sense of belonging among fellow misfits. However, her physical ailments worsened over time, leading to her semi-retirement in 2018.
  
  
• A Life-Altering Injury 
  • While working as a metal fabricator, Aella sustained a severe spine injury exacerbated by a chiropractor's mishandling, leaving her hospitalized and homeless.
  • Aella describes her struggles after the injury, including homelessness, reliance on Medicaid and disability benefits, and the challenges of finding affordable housing. 
  
  
• Medical Gaslighting and Misdiagnosis
  • Aella discusses her experiences with medical invalidation and misdiagnosis.
  • Aella talks about her advocacy efforts and how she became her own "mama bear" in seeking answers and support. 
  • She discovered the importance of community and connected with others with EDS, learning about ring splints and other resources.
  
  
• PANS/PANDAS Diagnosis
  • Aella shares her various diagnoses, including PANS/PANDAS, a neuroinflammatory disorder that can cause a range of symptoms. 
  • She discusses the cause of her PANS/PANDAS and the challenges of managing its symptoms, such as OCD, rage attacks, and tics.
  
  
• Ongoing Challenges and Medical Gaslighting 
  • Aella expressed her frustration with the medical system and the lack of understanding and validation she receives from doctors. 
  • She details specific instances of being dismissed and misdiagnosed, highlighting the impact this has on her mental and emotional well-being.
  
  
• Living with Chronic Pain and its Impact on Daily Life 
  • Aella discusses the difficulties of finding effective treatments and the constant struggle to manage her symptoms. 
  • She also shares her experiences with physical therapy and the limitations she faces due to her condition.
  
  

Don't miss this eye-opening conversation that sheds light on many's unseen struggles.

Support the show

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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Thank you for your support!

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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

Support the show

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

Please leave your review. Your feedback is so valuable to us! And it will help us reach more listeners like you.

Thank you for your support!

Support the show