by Caroline Gabsewics
Staff Writer
Three women with congenital heart defects are trying to raise awareness about their condition in Jacksonville.
They took their first steps yesterday when Mayor John Peyton signed a proclamation making Feb.7-14 Congenital Heart Defect Awareness Week.
The women are trying to raise awareness about Adult Congenital Heart Defects (ACHD) in Jacksonville and throughout Florida because there are not many doctors who are trained in the area. There’s a lack of specialized doctors because people used to think those with congenital heart defects wouldn’t survive, according to Kyra Ray, who has had multiple surgeries because of her heart defects.
“It is a new field in cardiology because no one ever thought we would make it past childhood,” she said.
According to the Adult Congenital Heart Association, about one million adults are living with heart defects in the United States and about 40,000 children with heart defects are born each year.
Allison Teger has to travel to Rochester to have surgery because there are not many doctors who specialize in ACHD in Jacksonville or Florida.
“We wanted to have an awareness week because of the limited doctors and centers of excellence for people with congenital heart defects,” she said.
A misconception many people have about congenital heart defects is that once someone has one surgery, they are cured.
“You aren’t fully cured [after one surgery],” said Ray. “It is a chronic condition and requires ongoing medical surveillance.”
Because of the ongoing check-ups, traveling to see a congenital heart specialist gets expensive, said Teger.
Mayor Peyton spent about 20 minutes with the women asking questions about congenital heart defects and their personal experiences.
“I hope this helps to raise more awareness,” he said. “We appreciate all that you are doing.”