I am a 25-year-old adult with cystic fibrosis living in the Cincinnati, OH suburbs. I’m an alumnus of the University of Kentucky where I studied biochemistry and minored in mathematics and biology. After graduating, I was fortunate enough to find a lab at Cincinnati Children’s Hospital that was doing compelling research on personalized medicine, mostly focusing on modulators and patients with rare diseases. Working in the lab has been both poetic and profound: I was treated at Cincinnati Children’s for 12 years so working behind the scenes has been especially rewarding. It’s also been a great privilege to see the science happening in the CF world while working alongside brilliant scientists and doctors.
I started writing after graduating college when I realized the benefit that writing provided: It’s a chance to tell my story, thus increasing awareness, while also being therapeutic for myself. Hopefully, it also helps others to be open about their lives, whether it’s about mental health, grief, their fascination with a niche topic, or whatever else. I have made it a priority to become a professional advocate and consider it my biggest goal to ensure that I’m always including as many voices as possible in the fray. I’m hoping my experience on the Blog committee will continue my pursuit of advancing the conversation around CF – in medicine, science, and society.
My health has been stable for several years and I’m very fortunate to have had had a positive response to Orkambi (I’m a ∆F508 homozygote). My sister’s health, on the other hand, was not so fortunate – She passed away due to chronic rejection of her second bilateral lung transplant in March of 2018. My sister was a huge role model in my life. Her spirit, her perseverance, the way she treated others always inspired me. It breaks my heart that she was unable to maintain a full-time job, get married, or even move out on her own. Through seeing her experiences, I have become even more attuned to the way it can be difficult for people with chronic diseases and disabilities to maintain their lives.
I can’t forget to mention: I have a beautiful 5-year-old mini golden retriever named Duncan!