Deep Sankar Dasgupta with daughter Deepanwita Dasgupta, when she was 3 years old. Deepanwita was later diagnosed with subacute sclerosing panencephalitis, or SSPE, a rare but debilitating complication from a prior measles infection.(Anindita Dasgupta)
The first sign came when Deepanwita Dasgupta was 5 and started stumbling more while playing at her home in Bangalore in southern India. The girl was always up to something, so her parents figured extra bumps and bruises were just symptoms of an active childhood. Maybe, they thought, it was ill-fitting shoes.
Relatives described the unicorn-loving child as smart, affectionate, and occasionally rascally. Before she learned the alphabet, she had figured out how to find her favorite show, Blippi, on a phone. She was known to sneak butter from the fridge to enjoy a few finger licks.
But then her limbs started jerking. A spinal tap revealed measles in her cerebrospinal fluid. The virus she probably had as an infant had secretly made its way to her brain. Now 8 years old, Deepanwita is paralyzed, unable to talk.
Measles causes complications — ranging from diarrhea to death — in 3 in 10 infected people, according to the Infectious Diseases Society of America. Some are immediate, while others take weeks or months to appear. The one Deepanwita is experiencing, subacute sclerosing panencephalitis, or SSPE, typically takes years to rear its head.
“People think, ‘Oh, you know, if we get measles, then we’ll be fine, because I know my neighbor had it and they’re fine,’” said Yasmin Khakoo, who leads the national Child Neurology Society but spoke to KFF Health News in her capacity as a New York City doctor with expertise in neurologic conditions.
Measles, though, can be dangerous: A 7-year-old in South Carolina will have to relearn how to walk after enduring one of the more immediate complications, brain swelling. And every so often, the virus plants a ticking time bomb in the nervous system. A person can recover from measles and continue life as usual, no longer contagious and without any identifiable symptoms — sometimes for a decade or more — before problems appear. While some patients end up severely disabled for a while, Khakoo said, the condition is almost always fatal.
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Before the advent of widespread and effective vaccines, the complication occurred enough in the U.S. that in the 1960s a …