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

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.