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Rare And Undiagnosed: Daunting Challenges For Patients, Doctors, And Researchers Alike, Dwane Unruh

Patient Experience Journal

This personal narrative identifies several challenges for patients, doctors, and researchers posed by rare illnesses and difficult to diagnose/long-term undiagnosed patients. In it, I describe several observations on my experiences as a long-time undiagnosed patient and now as one with multiple rare conditions. Rare conditions are all too often missed in diagnosis or dismissed, and treatment is often significantly delayed, such as it was in my case for nearly two years. Adding rare symptoms into the mix makes the challenges of diagnosis and treatment even greater, and I had some extremely rare symptoms. The only way I was able to …