Ashley Fabio of Grand Island knows all too well what it's like to live with cystic fibrosis, a progressive genetic disease with no cure that causes persistent lung infections.
Some have compared cystic fibrosis to breathing through a straw.
Since 2007, when Fabio graduated high school, she has been hospitalized every three months for two weeks at a time. She receives IV treatments of antibiotics three times a day, for 45 minutes to an hour, and undergoes breathing treatments four times a day for 30 minutes at a time.
Fabio also takes about 20 pills a day to help with her breathing condition. Still, she is encouraged by recent medical breakthroughs.
"We have had a lot of drug developments in the last few years," she said. "The researchers have come a long way. They still have a way to go, but it is helping a lot of patients stay out of the hospital."
This weekend, the Cystic Fibrosis Foundation will hold its "Great Strides" 5K walk. On Saturday, the walk will depart from the Nichols School in Buffalo and Veterans Park in Tonawanda. On Sunday, walks will be held in Island Park in Amherst, Yates Park in Orchard Park and Widewaters Park Pavilion in Lockport. Check-in starts at 10 a.m., with the walk beginning at 11 a.m.
There is no registration fee or preregistration required. Donations are welcomed. For more information, call 204-2535 or email firstname.lastname@example.org.
"Just like one inherits blue eyes or brown eyes, one can inherit a defective cystic fibrosis gene," said Gia Coone, executive director of the Cystic Fibrosis Foundation for Western New York.
More than 30,000 people have the condition in the United States, with over half age 18 or older. Coone said lifespans are increasing because of research.
"Children once rarely made it past elementary school. Now, because of the work of the foundation, we see people grow into adult age," she said. "The median age is around 40, and we are pushing that with the research we're doing."
Coone recently received a photograph of a grandfather holding his first grandchild.
"This was someone who years ago would not have been able to lead a full life," she said. "Walks like ours fuel the science that make these advancements possible."
Story topics: Shared