Kylie Rieger
There is currently no cure for cystic fibrosis and too many people with CF die young. I’m walking to help change that reality.
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
As a kid, I was faced with a lot of "what is CF?" or even "huh, you don't look sick?" - and I wasn't. Growing up in my doctor's office, I was the "poster patient" being in good health, staying up to date with my medications, having good Pulmonary Function Test numbers, staying on track with my weight & nutrition. I was healthy enough to be a dancer, a gymnast, a cheerleader & a track runner. I truthfully didn't know a dark side to CF. I just knew of it as "something I have".
When I hit high school that all completely changed. Just in my freshman year I was faced with my first hospitalization, followed by chest tubes, months in and out of the hospital (shoutout to my 6200 nurses & doctors who now are lifelong friends), countless procedures, scans, IV antibiotics, 11 PICC lines, Diabetes, Gastrointestinal problems. I saw specialists out the wazoo. Not seeing my friends at school or outside of school was a huge change and mental challenge. As most teen girls, I constantly thought about boys and friends and how I thought I would never be a normal girl with this disease constantly following me around. I was faced with the dark side of CF. Still, I picked up the pieces and moved forward.
I went to school, saw my friends & lived my life as if I wasn't reading a mentally taxing doctor's appointment or a long day timing out my medications with my after-school activities. Around this time, I was shown that my mental health deserved as much attention as my physical health. With everything I was dealing with, I started seeing a therapist and it was one of the best decisions I have ever made. There was no way I was going to continue at the speed I was going without some kind of help.
Freshman year of college, I was able to start the life-changing medication Trikafta, a CFTR modulator that drastically changed the outlook on life for those with at least one copy of the Delta- F508 mutation, which is a majority of the CF community. Within 4 days of starting this medication, I was breathing must easier and my admissions drastically decreased. Before Trikafta, the average life expectancy was in the 40's and it has only increased since then. I have only had a handful of admissions since starting this medication in 2019.
After Trikafta's success, I was given an even more important task in my life. It was my turn to become the caregiver & return the favor for my mom- who spent years taking care of me. My mom was diagnosed with melanoma during COVID so to say my whole world was flipped upside down is an understatement. I cared for my mom through her entire cancer journey to the end & I am grateful I was able to care for her as deeply and as loving as she did for me. Though I suffered an incredible loss, I picked up the pieces and moved forward.
I am healthy enough to do all of the things I love, watching my sister grow up & supporting her in everything she is involved in. I found the love of my life and I have the best group of friends who have supported me & picked me up when I needed them most!
I am walking in Great Strides 2025 to spread awareness of the disease that taught me how to care for myself, manage multiple aspects of life & most importantly taught me to not to hide who I am or my disease. This disease made me wise beyond my years, so I am walking in hopes of lessening the amount of people who have to pick up their pieces and just move forward. I am passionate about showing others we are more than CF and we have vibrant lives left to live!
Please help me reach my goal until keep fighting until CF stands for "Cure Found"
Kylie Sue <3
Team Page: https://fundraise.cff.org/ClevelandGS2025/kyliespowerhouse
CF is a genetic, life-shortening disease that devastates the lungs, pancreas, and other vital organs. CF makes it difficult to breathe and fight life-threatening infections, often leading to extensive lung damage and respiratory failure.
As a kid, I was faced with a lot of "what is CF?" or even "huh, you don't look sick?" - and I wasn't. Growing up in my doctor's office, I was the "poster patient" being in good health, staying up to date with my medications, having good Pulmonary Function Test numbers, staying on track with my weight & nutrition. I was healthy enough to be a dancer, a gymnast, a cheerleader & a track runner. I truthfully didn't know a dark side to CF. I just knew of it as "something I have".
When I hit high school that all completely changed. Just in my freshman year I was faced with my first hospitalization, followed by chest tubes, months in and out of the hospital (shoutout to my 6200 nurses & doctors who now are lifelong friends), countless procedures, scans, IV antibiotics, 11 PICC lines, Diabetes, Gastrointestinal problems. I saw specialists out the wazoo. Not seeing my friends at school or outside of school was a huge change and mental challenge. As most teen girls, I constantly thought about boys and friends and how I thought I would never be a normal girl with this disease constantly following me around. I was faced with the dark side of CF. Still, I picked up the pieces and moved forward.
I went to school, saw my friends & lived my life as if I wasn't reading a mentally taxing doctor's appointment or a long day timing out my medications with my after-school activities. Around this time, I was shown that my mental health deserved as much attention as my physical health. With everything I was dealing with, I started seeing a therapist and it was one of the best decisions I have ever made. There was no way I was going to continue at the speed I was going without some kind of help.
Freshman year of college, I was able to start the life-changing medication Trikafta, a CFTR modulator that drastically changed the outlook on life for those with at least one copy of the Delta- F508 mutation, which is a majority of the CF community. Within 4 days of starting this medication, I was breathing must easier and my admissions drastically decreased. Before Trikafta, the average life expectancy was in the 40's and it has only increased since then. I have only had a handful of admissions since starting this medication in 2019.
After Trikafta's success, I was given an even more important task in my life. It was my turn to become the caregiver & return the favor for my mom- who spent years taking care of me. My mom was diagnosed with melanoma during COVID so to say my whole world was flipped upside down is an understatement. I cared for my mom through her entire cancer journey to the end & I am grateful I was able to care for her as deeply and as loving as she did for me. Though I suffered an incredible loss, I picked up the pieces and moved forward.
I am healthy enough to do all of the things I love, watching my sister grow up & supporting her in everything she is involved in. I found the love of my life and I have the best group of friends who have supported me & picked me up when I needed them most!
I am walking in Great Strides 2025 to spread awareness of the disease that taught me how to care for myself, manage multiple aspects of life & most importantly taught me to not to hide who I am or my disease. This disease made me wise beyond my years, so I am walking in hopes of lessening the amount of people who have to pick up their pieces and just move forward. I am passionate about showing others we are more than CF and we have vibrant lives left to live!
Please help me reach my goal until keep fighting until CF stands for "Cure Found"
Kylie Sue <3
Team Page: https://fundraise.cff.org/ClevelandGS2025/kyliespowerhouse
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