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

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Marika 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 hypermobility, vision loss, and neurological issues. Despite her challenges, Marika continues to seek treatment and advocate for better care.

She recounts the difficulties she faced in receiving an accurate diagnosis and the challenges she faced with accessing comprehensive healthcare due to her condition's rarity. Marika emphasizes the importance of finding joy amid uncertainty, describing how she finds solace in gardening, photography, and spending time with her children. The conversation also touches on societal perceptions, the need for healthcare reform, and the importance of community support for individuals facing similar struggles.

1. Marika's Diagnosis Journey
   • Symptoms and conditions leading to her diagnosis of Loeys-Dietz syndrome.
   • Difficulties in obtaining a diagnosis due to a lack of awareness about rare disorders.
   • Impact on her daily life and comorbidities.
2. Healthcare System Challenges
   • Struggles with getting appropriate imaging and comprehensive medical evaluations.
   • Misunderstandings in physical therapy and the importance of functional goals.
   • Financial challenges related to specialized care and out-of-pocket expenses.
3. Living with Loeys-Dietz Syndrome
   • Navigating daily life with a rare condition.
   • Finding joy and strength in creative outlets like gardening and photography.
   • Balancing familial responsibilities while managing her health.
4. Advocating for Change
   • The importance of mental health support and community.
   • Challenges in societal perceptions and medical stereotyping.
   • How Marika aims to increase awareness and offer hope to others.

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Please follow us on social media @HiddenDiagnosesImpact, watch the video format on Youtube @hiddendiagnosesimpact
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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
Please leave your review. Your feedback is so valuable to us! And it will help us reach more listeners like you.
Support Us on Ko-fi: https://ko-fi.com/hdipodcast

If you found this episode valuable, please consider supporting us on Ko-fi. Your donations help us continue to raise awareness and share important stories.

Thank you for your support!

Send us a text

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
Please leave your review. Your feedback is so valuable to us! And it will help us reach more listeners like you.
Support Us on Ko-fi: https://ko-fi.com/hdipodcast

If you found this episode valuable, please consider supporting us on Ko-fi. Your donations help us continue to raise awareness and share important stories.

Thank you for your support!

Send us a text

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
Please leave your review. Your feedback is so valuable to us! And it will help us reach more listeners like you.
Support Us on Ko-fi: https://ko-fi.com/hdipodcast

If you found this episode valuable, please consider supporting us on Ko-fi. Your donations help us continue to raise awareness and share important stories.

Thank you for your support!

Send us a text

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.

Support the show

Please follow us on social media @HiddenDiagnosesImpact, watch the video format on Youtube @hiddendiagnosesimpact
Please leave your review. Your feedback is so valuable to us! And it will help us reach more listeners like you.
Support Us on Ko-fi: https://ko-fi.com/hdipodcast

If you found this episode valuable, please consider supporting us on Ko-fi. Your donations help us continue to raise awareness and share important stories.

Thank you for your support!