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Saritee Sanodiya, 26, has spent countless days wondering if she’ll ever live a “normal” life. Growing up, Sanodiya often missed school, frequenting the hospital for sudden, life-threatening drops in her hemoglobin levels and excruciating pain in her joints. High fever, severe headache, extreme fatigue, and difficulty breathing often accompanied these crises, which lasted days—occasionally weeks. “It would come out of nowhere,” she says. “The pain is hard to describe, but it’s unbearable. Sometimes you lose the desire to live.”
In hospitals, doctors would treat the anemia with blood transfusions and prescribe painkillers to relieve the acute body aches. The symptoms would subside, but within months, they would come roaring back.
In the hope that someone could find and fix the problem, Sanodiya’s mother took her to different doctors in and around their village of Jamuniya in the central Indian state of Madhya Pradesh, to no avail. The crises continued into Sanodiya’s adolescence, and they were often preceded by jaundice—a condition easily recognized by the yellowing of the skin and whites of the eyes.
Finally, in 2018, an answer came. The...
