PATIENT VOICES: I DIDN’T FEEL LIKE I HAD TO DRIVE THE BUS
In this health narrative of the MyPaTH Story Booth archive, a mother describes her experience caring for her daughter who has Down syndrome. Her daughter had several respiratory system surgeries before the age of two and was also diagnosed with a hip dislocation disorder. Through all of this, the storyteller emphasizes how important their pediatrician became to them and how he was a source of comfort and care for both mother and daughter. The daughter has had additional medical issues beyond early childhood, including hyperthyroidism, but these have been handled with relative ease. However, as the daughter entered her twenties, she struggled to find a primary care physician who had experience in caring for a patient with Down syndrome outside of Pediatrics. Her mother, a nurse, attributes their previous success finding care to her experience in the medical system and their pediatrician's emphasis on empowered care. Now age twenty-eight, her daughter is living independently, confidently navigating medical appointments, and working on her master’s degree.
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