Arlen's Journey: Seeking Treatment for Rare Genetic Conditions in the U.S.

Send us a text

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.

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!