Majoring in computer science at Johns Hopkins is tough enough, but it's even more challenging when must a student must also keep a life-threatening disease like cystic fibrosis under control.
Rachel Kinney, a 20-year-old Pittsburgh resident who just finished her sophomore year at Johns Hopkins, has been up to the task. She has attended to her studies, given herself daily health treatments, and also found some spare time to play video games with her friends in her dorm. She even competed on a campus Quidditch team.
During her spring semester, Kinney allowed a camera crew from the Maryland-based Cystic Fibrosis Foundation to follow her through her campus routine. The resulting video is part of a series that showcases the everyday lives of adults with cystic fibrosis and the challenges they face.
Cystic fibrosis is a genetic disease that primarily affects the lungs and digestive system. An estimated 30,000 children and adults in the United States, and 70,000 worldwide, have CF. More information about the disease can be found at http://www.cff.org/AboutCF/.
In the following interview Rachel talks about why she chose to share glimpses of her life as Johns Hopkins undergraduate:
How did you happen to be invited to do this video about your life at Johns Hopkins?
I've been doing speeches for the CF Foundation since I was 3 years old in my hometown of Pittsburgh, and over the years my mom has become extremely involved in all of the work that the foundation does, even at a national level. Through my own experiences and my mom's involvement, the foundation has come to know me, and they invited me to be featured in this video series.
Why did you choose to participate?
For me, this project was about reaching out to other CF kids who are in college, or will be going to college soon, and sharing my experience with them. The most critical thing to a CF patient is staying on top of the disease. In college, your whole lifestyle changes dramatically, and you have to stay on top of the disease more than ever before.
It is a hard transition for anyone, but for someone with CF, CF has to be one of your highest priorities at all times. I wanted to share my experiences with other CF patients and parents to show that it is absolutely possible to live a happy, normal, productive life in college and continue to combat CF. I hope my experiences can act as an example for anyone who is worried about or is struggling with CF in college.
What do you hope that your fellow Johns Hopkins students and others will take away from viewing this video about your studies and other activities at JHU, as well as the treatment you must undergo because of your CF?
To people like my fellow classmates, I hope this video spreads awareness of cystic fibrosis. If anyone they know is struggling with college, for any reason, one of the greatest things you can offer is your support. And if they, themselves, are struggling, I hope that this video inspires them to keep moving forward through whatever life throws at you, because with determination and support, anything is possible.
Is there anything that you have not been able to do at Johns Hopkins because of your CF? Do your fellow students treat you differently because of it, or do they not even realize you have the disease?
I'm am proud to say that there is nothing at JHU that I have not been able to do because of my CF. That is not to say that it's been easy. Staying on top of my CF routine along with all the normal facets of college is one of the most challenging things I have had to deal with in my whole life.
If I didn't tell people that I have CF, nobody (aside from my roommates) would ever know. The only outward symptoms are often a consistent cough, and salty skin. I wear CF on my sleeve and have never understood why I wouldn't. I have never met anyone who didn't accept me for who I am in that regard. It's just one thing that I have to deal with in life that most people are lucky enough not to have to deal with.
When someone asks you what CF is, how do you describe it in the most easy-to-grasp terms?
To put it very simply, I describe CF as a genetic disease that mostly targets the lungs and digestive system. My lungs and digestion don't work as they are supposed to, so I have to put a lot of time and effort into keeping my lungs and body healthy. Otherwise, my lungs would scar and deteriorate, and I would not be able to get any nutrients from my food. There is much more to CF than just this short description, but that is it in a brief nutshell.
What are your career aspirations? What do you hope the future holds for you in, say, 10 years?
I don't know exactly what the world of computer science holds for me yet. All I know is that I love it! I like to get creative, and I love to get technical. I hope to find a job down the line that lets me combine the two in fantastic and exciting ways!
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