Photo:Getty Images
Getty Images
The government agency estimates the number of Americans experiencing the allergy could be as high as 450,000, which would make it the 10th most common food allergy in the country, per theAssociated Press.
The CDC found that there is a lack of information about the allergy, its causes and its symptoms. Per thesecond report, 78% of the 1,500 health care providers surveyed had little to no knowledge of the syndrome, and nearly 50% those who did know of AGS reported they were unsure of the proper tests to order to diagnose it.
The data also found that 42% of the doctors, nurse practitioners and physician assistants who responded were not aware of AGS, and another 35% were not confident in their ability to diagnose or manage AGS patients.
The authors of the study called the knowledge gap they discovered “concerning” when looking at the continued increase in antibody test results that were positive for the syndrome, the rising number of suspected cases and the growing reach of the lone star tick. Tick season is also longer than it has been in the past, due to warmer temperatures.
“AGS is not a nationally notifiable condition, and understanding epidemiologic trends relies on laboratory-based surveillance,” the authors wrote in the study. “The lack of HCP knowledge of AGS is likely to lead to undertesting, further hampering knowledge of the national prevalence of AGS.”
The symptoms of AGS can range from mild, with patients experiencing gastrointestinal problems, to severe, with some experiencing anaphylaxis.
Katie Cahoj, who has alpha-gal syndrome, at home in Missouri in 2023.Cheyenne McIntosh
Cheyenne McIntosh
“I had to read every single label,” she told PEOPLE. “I was afraid to eat anything."
She lost 30 lbs. in six months out of pure fear. “The only thing I felt safe eating was what I made,” she says, which was mostly raw vegetables and chicken. She eventually started experimenting in the kitchen and even self-publishedAn Alpha Gal Cooks, a cookbook full of safe recipes for other people suffering from the disease.
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There is no cure for alpha-gal syndrome. Treatments may include antihistamines, steroids and epinephrine to manage symptoms, but people with the disease must avoid food triggers in the first place.
source: people.com
