Richmond girl with narcolepsy works to fight against stigma

Published: May. 19, 2016 at 2:51 PM EDT|Updated: May. 19, 2016 at 9:06 PM EDT
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RICHMOND, VA (WWBT) - It's called the "sleep" disease and it affects one in every 2,000 people in the United States, including many in Virginia.

Tamera Harris-Wilkins' daughter, Carter Asha-Redd has narcolepsy and now the family is working to fight against the stigma that surrounds the disease.

Dr. Christopher Winter, of Charlottesville Neurology and Sleep Medicine is Carter's sleep doctor. He says narcoleptics are lacking a chemical called hypocretin, a chemical used in the regulation of the sleep/wake cycle.

While a person's hypocretin resets itself at night so they are able to stay awake the next day, a person with narcolepsy doesn't create the chemicals that fuel wakefulness, making it almost impossible to stay awake the entire next day.

The onset of narcolepsy typically happens between the age of 10 and 30. Dr. Winter says most of the time it is genetic and most doctors have a hard time diagnosing the disorder.

"It's one of those disabilities no one picks up on or they misdiagnose it as learning disability or attention deficit problems," Dr. Winter said.

Winter was the first doctor to diagnose Carter. Harris-Wilkins took her daughter to numerous doctors who said Carter's symptoms were "just a stage of life."

"This little girl slept wonderfully during the night and then fell asleep in an average of two minutes every time you'd give her the opportunity to do so," Winter said. "That's really difficult to do considering you are hooked up to wires, a bunch of techs around you on camera, she could do it with no problem. As soon as you turn out the lights, in 120 seconds she was asleep."

Asha-Redd started feeling the symptoms in June of 2015 at 11-years-old. She was so tired and lethargic, her grades started to slip and she'd fall asleep in movies, at friends' homes, church and even class.

Asha-Redd's classmates were making fun of her.

The 11-year-old was called names like lazy as she desperately tried to stay awake in class.

"We thought I was just really tired," Asha-Redd said. "I would try to go to sleep early and it still wouldn't help."

It was a relief for Asha-Redd to finally have a name for her symptoms.

The Narcolepsy Network says narcolepsy affects an estimated one in every 2,000 people in the US; that's approximately 200,000
Americans suffering from the disease.

Asha-Redd belongs to an organization called The Central Virginia Narcolepsy support group. The group was started by Susie Golden out of Charlottesville; Golden's son and daughter both were diagnosed with narcolepsy. Golden started the group after realizing there wasn't a support group in the state.

"Here it is three years in and we have about 35 people who come," Golden said.

35 people who share stories of pain and discomfort but hopefulness in fighting the disorder that has drastically altered their lives.

Carter is learning to accept her disorder and is speaking out to teach others about the sleep disease that she says is misunderstood.

There is no cure for narcolepsy but there are numerous medications that can help a person experience wakefulness during the day and sleep through the night. Those medications are typically costly and the one that will work best, depends on the person.

If you are suffering from narcolepsy and would like to join the Central Virginia Narcolepsy support group, they meet every second Saturday of each month at C'Ville Coffee in Charlottesville at 2pm.

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