Patient stories

Leah Schwanke – Empowering CF Fighter

She was diagnosed with CF at 1 years old. According to her mother, the story goes that Leah was occasionally supervised by her mother’s friend who had a baby around the same age. Leah’s mom would drop off 3-4 jars of baby food knowing that Leah had quite the appetite, whereas the other baby would only eat half a jar. Even after all of that eating, she gained no weight! Leah’s pediatrician sent her to a CF doctor who, through a sweat test, confirmed her diagnosis. Without saying much else, though, he sent the mother and daughter on their way. What her mother remembers the most is that as they left the office feeling confused and terrified, Leah pulled on her mom’s beaded necklace that she was wearing, and it shattered all over the ground. She felt it was so symbolic of that moment, because her world had shattered.

Leah does not recall a specific moment when she was told that she had CF but recalls doing the local walks and taking enzymes. She does not even remember a time of not doing something CF related. She was very aware of what needed to be done, so most of her childhood upbringing felt unfair for her. While other kids could go outside and run around without supervision, she had to go to the nurse’s office during lunch to take pills that she has always known how to consume. Finally, around 5th grade, that stopped.

Leah’s CF symptoms have been pretty mild for most of her life. She would usually have her annual summer visit to prepare her for the upcoming school year. Her symptoms are more respiratory than digestive and if there were a flare up, it was usually a drop in PFTs and not GI issues. Her overall health is astoundingly great. More recently, she was diagnosed with CFRD, though, which was an adjustment.

While CF certainly was time consuming in her upbringing, it shaped her to learn to not waste time. She mentioned that while she’s not afraid of death, she’s afraid of running out of time. She has many adventures on her bucket list and is a self-proclaimed “impatient”, therefore, if she wants to do it then she figures out a way. It has taught her to not be lazy which has led her to her current career path.

Having graduated with a Bachelor’s degree in Social Work and Associates degree in Nutrition in just 4 years, Leah has been able to see both sides of the healthcare spectrum. Her interest in counseling others on healthy eating dissipated having experienced each side. She noted that physicians will instruct patients to not eat certain things, but at the end of the day, the patients will end up eating what they want, and she didn’t want to be the one telling them what they could and could not eat.

She recently left a role that consumed the better part of 4 hours of her day solely commuting to it. “My life is short enough as it is.” She wanted to do something that she loved and found that in teaching physical self defense for women and girls. While in college, she took a course called RAD – Rape Aggression Defense. She loved it, but never considered being an instructor because her focus was school. Later, she learned about the instructor course and has been teaching it for 2 years. With extra time on her hands, now, she emphasized how excited she was to teach more classes. She really values female empowerment and loves telling women that they don’t have to lift weights to take down someone. They just need to know the right techniques! She also appreciates that it ties back to her social work major and how she really feels like this is her calling.

Leah was certainly not short of words, but one thing stuck. She felt like she wasn’t worthy of sharing her story because she viewed her symptoms as more “mild” than others and felt guilty. She reflected on how disappointing it is that she can’t work for an organization like the CF Foundation because of her CF. She does know that she’s not quitting on fighting for what she feels will give her the most out of this life. We ended the discussion chatting about the new film “Five Feet Apart” in which she wrote an op-ed about it. Read it below:

“The CF community is divided on a new issue in the world of Cystic Fibrosis. Funny enough what the community is divided on now has nothing to do with taking their treatments or being in the hospital but rather it is about going to the movies, specifically to see Five Feet Apart. Yes, Five Feet Apart, the new Hollywood movie featuring two teenagers, battling Cystic Fibrosis. I think I first heard about the possibility of a movie being released about CF sometime last year and I remember initially feeling really excited about it. CF in the general population is such a small community, I still meet people every day in my adult life that have never even heard of it so the thought of a major motion picture bringing light and awareness to this disease was amazing! I will say I personally have not seen the movie and am unsure if I will. I did however read the book. My honest review of the book is it romanticizes having Cystic Fibrosis and what it’s like to be in the hospital for weeks or months at a time. Without spoiling anything there are certain things these kids are able to do, places they are able to “explore” in the hospital that absolutely would not fly in an inpatient setting. I think it is probably good for the “general” viewing audience of teenage girls or families that want to go to the movies to see a romantic film or heartfelt story on a Saturday night. I think the very fact that this movie defines and makes you understand that CF Patients have a “6 ft. rule” and by labeling this movie as “Five Feet Apart” and releasing it in public movie theaters  rather than a Netflix release speaks to the true lack of understanding that makers of the film have about this disease. With that being said, as someone living every single day with this illness, and knows the real risks of cross contamination that the movie only touches on, I will not be venturing into any movie theater to see a movie focused on the battle of Cystic Fibrosis. I have been fighting it for 25 years and I will continue to fight it, but I will not play risk with my health when I can wait for it to come out on Netflix or DVD. I respect all other opinions and views of Five Feet Apart and I commend CBS Films for taking the risk to air a movie publicly on such a sensitive topic for just a small few of us fighters.”

We appreciate you and your story, Leah!

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