LITTLE ROCK, AR -- People living with a potentially deadly allergy shared their stories Monday at the Capitol.
They described fear and confusion. First, not know what is wrong with them, then struggling with a potentially deadly allergy called Alpha-Gal that even doctors know little about.
"They all look at me with this deer in the headlight look," Brandie Bland said of the doctors.
"I was very close to death," said Sharon Barker.
It starts with a tick bite that doctors say causes an allergy to mammal products.
"It has changed my whole world," State Rep. Julie Mayberry said. "It's life changing. It's life threatening."
If exposed, those suffering may go into anaphylactic shock which can be deadly.
Patients with milder symptoms can can suffer for months or even years with swelling, coughing and digestive issues before being diagnosed.
"I went to my doctor and said, 'you need to pull this blood test,'" "He said, 'I've never heard of this.'"
A task force on Alpha-Gal was established during that last legislative session thanks to a bill sponsored by State Representative Julie Mayberry, R-Hensley.
She suffers from the allergy and says her goal is to spread awareness of its many implications.
"There's a whole slew of medications that I can't have that are life threatening to me," Mayberry said.
During a Monday hearing, doctors researching Alpha-Gal said it's difficult to determine how many people have the allergy. Some estimates put the number in states like Arkansas as high as 20 percent of the population.
"We first described it in Arkansas and Missouri," said Dr. Tina Merritt of the Allergy and Asthma Clinic of Northwest Arkansas. "It seems to also include Oklahoma and then it goes over to North Carolina and Virginia and now it's spreading."
Experts says those are the states where Alpha-Gal is most prevalent because they are where the lone star tick is found in high numbers.
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