Upstate double, lung transplant patient raises awareness for Cystic Fibrosis

Published: May. 13, 2022 at 6:15 PM EDT
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ANDERSON, S.C. (FOX Carolina) - May is Cystic Fibrosis Awareness Month.

AnnMarie Robertson was diagnosed at 18 months old. At age 25, she had to undergo a double, lung transplant.

“C.F. is not written all over your face. And so, the struggle can be a lot of behind the scenes,” Robertson said.

According to eh Cystic Fibrosis Foundation, Cystic Fibrosis is a progressive, genetic disease that causes long-lasting lung infections and limits the ability to breathe over time.

“I, personally, had a lot of constant infection in my lungs all through my childhood and early, adult years,” said Robertson.

And after surgery, Robertson had to go through months of pulmonary therapy.

“I didn’t wake up and feel amazing right away,” said Robertson, “I can say, maybe, about six months after transplant was when I was finally like, ‘OK, I think I’m fairly normal now. I can take a deep breath, and nothing hurts.”

Tim Whelan was her transplant doctor and is the director of MUSC’s lung transplant program. He says the disease doesn’t just affect the lungs.

“It can affect your pancreas. So, diabetes is common. It affects the GI-tract—so malabsorption,” said Whelan.

Whelan also says it can affect the liver, but new drugs are making a difference.

“We had patients that we were really concerned about. We thought they needed a transplant. We started them on those newer medicines,” said Whelan, “And they, actually, got a lot better. And we took one of our patients off the list.”

Robertson says she would often go in Dr. Whelan’s office to just talk. He and her family and loved one’s support meant everything. She says the new drugs are expensive. That’s why raising awareness is so important.

“What you see on the outside isn’t always what’s going on. I know, for people with C.F., we get told that we look fine,” Robertson said, “You can’t see it. It’s a silent disease.”

If you’d like to support, you can use the hashtag #CFAwarenessMonth or donate to the Cystic Fibrosis Foundation.