As a young child in the 1980s, Jiwa Farrell earned the moniker “Little Apple Cheeks” because her face was always so “cute and pink.” But by the time she was 6 years old, she had already begun recognizing that something else distinguished her from other kids besides her bright pink complexion.

“I had flu-like symptoms all throughout my childhood and always felt very fatigued,” Farrell told Medscape Medical News . “My muscles ached, my joints ached, and I remember thinking as a kid to myself, ‘If I feel this way and other people don’t feel this way, what’s wrong with me?’”

The answer to that question would take a decade for Farrell and her family to discover, and for most of those years, Farrell’s mother, Sharon, had grown so frustrated with doctors that she started letting them know at

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