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Meet The Person Living With A Deadly 200-Year-Old ‘Curse’

by : UNILAD on : 05 Nov 2015 15:12
MicJon LevineMicJon LevineMic/Jon Levine

Congenital Central Hypoventilation Syndrome is a rare genetic mutation which causes sufferers of it to forget how to breath when they’re asleep.

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There are roughly about 1,000 cases worldwide, and the disease strikes girls and boys totally at random, Mic reports.

Marissa Schain, 26, is one of those unlucky people. She told Mic:

When we fall asleep we don’t get the signal in our brain to keep breathing… I was about three weeks old, my mom found me in my crib and I was blue. I was almost basically dead.

Like most people with CCHS, Schain undergo a tracheotomy, where she was fitted with a breathing tube that is hooked up to a ventilator every night – while this kept her alive, the procedure also makes CCHS sufferers susceptible to potentially life-threatening infections, like pneumonia.

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She now uses a set of pacemakers to stimulates her breathing, by sending electrical currents to her diaphragm. Schain prefers to live her life than dwell on CCHS, though, and doesn’t view it as a ‘curse’, adding: “We don’t want to think of it as a curse. It makes it sounds so much worse than it is.”

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CCHS is a congenital disorder, meaning most doctors agree that a final resolution would have to be found through gene therapy, relying on technology we haven’t discovered yet.

But Schain has come to terms with her illness, saying: “I don’t even think about it. When I’m in everyday life, I just kind of go about my thing.”

Well that puts things into perspective. Inspirational.

Topics: Life

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Mic
  1. Mic

    Meet the People Living With a Deadly 200-Year-Old Curse