At 3 months old, Carly Lindmeier was diagnosed with cystic fibrosis. Now, as a college junior, she is involved in research to advance therapy for the condition.

Cystic fibrosis is a recessive genetic disorder that causes persistent lung infections and limits the ability to breathe over time. It is a progressive disease that affects more than 30,000 Americans, according to the Cystic Fibrosis Foundation’s website.

Lindmeier, a communication sciences and disorders major, attended a local community college in Orange County, California, prior to transferring to Syracuse University. The community college taught her how to manage being an adult with cystic fibrosis.

“I think those two years really helped me figure out how I can do it own my own, and it gave me the confidence to just move across the country and do that,” she said.

A driving factor for choosing SU was the walking distance to State University of New York Upstate Medical University, which has an accredited cystic fibrosis clinic. Lindmeier explained how she is on a texting basis with Upstate and can easily communicate with them when she has a flare-up. A month ago, she became a paid research study participant where she takes a medication that is working to further the therapies for cystic fibrosis.

Lindmeier is a pro when it comes to trying new study drugs to advance cystic fibrosis research. Right before she transferred to SU, she began taking a first of its kind medication that aids the faulty gene linked to cystic fibrosis. Lindmeier said before this she needed an IV a few times a year, but since transferring, she had her first one just two weeks ago.

“I’ve felt so healthy lately. I’ve felt so free since I’ve been here that for a while I was a little bit removed from the life I used to live,” she said. “That’s why I got involved with the Upstate research study, I know it’s things like that that allow me to be here.”

Lindmeier said one of the hardest things she’s had to deal with is getting really involved with the cystic fibrosis community. Because of the bacteria in their lungs, other patients with cystic fibrosis can’t be close to each other, making it more difficult to connect, but social media has been a major tool in connecting individuals with cystic fibrosis.

She has also been a speaker for the past several years at the Orange County chapter for cystic fibrosis and attends an annual gala called Pipeline to a Cure.

“It’s all about the connection between surfing and CF because the saltwater makes us cough and gets us active and is proven to be good for our lungs,” said Lindmeier.

While cystic fibrosis will always affect Lindmeier’s daily life, she does not let it prevent her from having a positive outlook on life.

“Being on a bigger campus has helped me realize that everyone has to overcome things,” she said. “Obviously you have to take care of your health, but I think I’ve just had a greater perspective on what life is about. It’s not about moping around and asking for sympathy. You have to do what you want done.”

Published on March 19, 2017 at 7:41 pm

Contact Caroline: caschagr@syr.edu