Russian teen, 16, dies after 11 month-long battle with ultra-rare insomnia

A Russian teenager has died after battling with an ultra-rare insomniac condition.

The 16-year-old allegedly died after an 11-month battle with the rare disorder "familial fatal insomnia" (FFI).

FFI affects the part of the brain that controls the sleep-wake cycle. It's believed it only affects a few dozen people worldwide.

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Emergency services worked tirelessly to revive the young boy, but they were unsuccessful and he passed away in his home on January 18.

According to MK, a Moscow-based daily newspaper, doctors had only managed to diagnose the condition at the end of 2022.

It's understood the teen had been battling the condition for 11 months.

The most common symptoms are sleep disturbance, psychiatric problems, weight loss and balance problems.

Other symptoms include high blood pressure, excess sweating and difficulty controlling body temperature. These symptoms tend to get worse over time.

Almost all cases of FFI occur due to a specific variant in the PRNP gene and are inherited in an autosomal dominant pattern.

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The teen first started experiencing signs of the disorder in February 2022, when he began having unexplained panic attacks.

Soon after doctors began treatment the teenager's limbs began to fail. Then the boy stopped closing his eyes during sleep.

Last month the patient lost his swallowing function and his parents were forced to feed him through a tube.

To date, this disease is considered incurable.

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