Cumming resident Amye Phinazee can best be described as courageous, spiritually faithful, passionate and resilient. Diagnosed with cystic fibrosis as a child, the 25-year-old has earned her stripes not only as a person living with CF, but as a crusader for CF research and a voice for more awareness about the complex, chronic disease.
Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits breathing function. It affects more than 30,000 children and adults in the United States, and about 70,000 worldwide, according to the Cystic Fibrosis Foundation. While CF primarily affects the lungs and digestive system, it can also have an impact on the pancreas and other organs.
Phinazee knows all too well about growing up with CF. Treatments can range from consuming multiple medications to lung treatments and frequent hospital stays. Because CF can be diagnosed as early as birth, treating the disease can be a burden on childhood.
When she was very young, Phinazee recalls being medicated to help digest her food. As she grew older, the disease began to target her lungs and living with CF became more challenging. Her middle-school years brought the onset of daily lung therapy treatments and more medications to manage symptoms.
Despite these difficulties, Phinazee remembers her childhood as being fun and normal, thanks to strong, dutiful parents, whom she describes as “a gift from God.”
“My parents made sure to not let CF define my childhood,” she said.
As an adult, the challenges of CF increased. Her lung issues progressed, and she developed CF-related diabetes and experienced more frequent visits to the hospital.
It was at age 22, after two back-to-back trips to the hospital, that Phinazee decided to become an advocate for the disease that had become ingrained in her daily life.
Today, Phinazee is involved with numerous charities that raise money for research and help spread awareness about the disease, including the CF Foundation Georgia chapter and Great Strides, CF Foundation’s annual walkathon charity event. She also uses social media and her blog to spread awareness.
This year, she is the ambassador for a local annual event called Cars and ‘Q for the Cause. Hosted by Choate Construction, the event has raised more than $1.7 million and is celebrating its 11th season.
Event founder and director Emily Bridges said selecting Phinazee as this year’s ambassador was a no-brainer.
“Amye is an inspiring, motivating and resilient woman using her voice as a beacon to both cure CF and comfort her CF peers,” Bridges said.
One does not typically think that having a chronic disease would be a blessing. But Phinazee said she does.
“The Lord has shown me that so many good things and opportunities can come from having a disease,” she said.
It’s that positive insight and appreciation for life that inspires others in Phinazee’s life, including her CF family. Vicky Nix, a friend and senior director of the CF Foundation’s Georgia chapter, has known and worked alongside Phinazee since meeting her as a teenager.
“I have loved watching her blossom into a young adult,” Nix said. “Her life and story inspire us all. She is a dynamic young adult who openly shares her journey with CF. She has a special gift in inspiring others to help not only her, but the entire CF community.”
These days, Phinazee's overall health is stable and under control, thanks to drug trials and treatments that are the result of new research and more CF awareness.
Living with the disease has taught Phinazee many valuable life lessons. The biggest perhaps is what makes her a true CF solider.
“The biggest lesson that I have learned is that every day is a gift, and what you do with that gift matters,” she said.