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• 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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