STATESVILLE, N.C. — A Statesville woman's life-threatening illness is pushing her to advocate for people with rare diseases across the nation.
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According the National Institutes of Health, roughly 25 million Americans are living with rare disorders.
Special education teacher Nicole McCoy is one of them.
She's working with doctors across the country to raise awareness for a disorder that could take her life. She's pushing the Food and Drug Administration to approve what she believes is a much-needed treatment.
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On the outside, McCoy appears to be a typical wife and mother.
"But on the inside, my body is really raging a serious disease," said McCoy.
She suffers from a rare disorder that leaves her fatigued, with severe stomach pains and pancreas problems.
McCoy said the issues started 16 years ago when she was pregnant. She said doctors were stunned when they tested her blood and it turned from red to white in minutes.
"My body can’t process fat, and it just starts filling up and my organs start shutting down," McCoy said.
She spent years in and out of the hospital, racking up medical bills. The illness kept her out of work and away from her family.
"It was a struggle, a huge struggle," she said.
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Despite multiple weekslong hospital stays, doctors couldn't seem to nail down a diagnosis. After 14 years of suffering, McCoy went to see Dr. Thomas Barringer, a specialist in Charlotte who helped confirm her diagnosis.
Barringer confirmed she had familial chylomicronemia syndrome, or FCS.
In August, she starting taking a new medication that changed her life.
Doctors said there are several symptoms of FCS, including daily stomach aches and back pains.
Soon after her diagnosis, McCoy received an exception from the FDA to take the drug Waylivra while manufacturers waited for approval. She said she started seeing improvements, including less pain and brain fog.
"Which is really a miracle, it brought a lot more hope to me and my family," she said.
In that same month, the FDA rejected the drug, concerned side effects could cause bleeding and even death. Barringer said as with many rare diseases, the number of people in the study was too small and the FDA needs more information.
"The FDA was in a bind, I think that they understand this is a potentially life-saving drug for some people," Barringer told Eyewitness News over the phone.
Barringer said one in a million people are diagnosed with FCS, but he believes four times as many have it but don't know.
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McCoy's exception means she will have access to the drug for three years. She said she will continue speaking to doctors around the country, hoping to help them diagnose people living with FCS more quickly.
Barringer and McCoy are spreading the word, hoping to help more people get diagnosed and that more research and treatment will follow.
"There is hope for the future," McCoy said.
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