"Taking Steps Forward" by Emily Grant

As I write this post, we are heading into CF awareness month. I also happen to be starting on IV antibiotics for a rather stubborn lung infection. How typical CF of me.

May is the month we all shout a little louder for a cure to be found. As anyone with CF will tell you, the unseen weight of the disease is heavy. The long hours of breathing treatments. The countless pills. The many miles put on the car driving to and from the doctor. The numerous phone calls to insurance. The exhaustion from just breathing. May is the month we put a spotlight on the work we do in order to survive that many of our friends, family members, coworkers, and acquaintances know nothing about. 

(Image above: CF Walk 2011)

One of my favorite parts of CF awareness month is the Great Strides CF Walk. My family has been participating in CF walks since 2000.  Growing up, my parents had a list of people we would send update letters to every year in order to raise money and recruit people to come join our team on walk day. In our biggest years, we had well over 100 people on our team, whether through donations or through walk participation. I left those walks feeling supported, loved, and encouraged, knowing that everyone on our team came out specifically to support me and my family. I was honored to speak at the Great Strides Walk in my area for several years in a row. During my speech, I would look into the crowd and see so many friends and family looking back at me. I would feel immense gratitude to be surrounded by people who were in my corner. Their support bolstered me on some of my hardest days and brought joy on some of my best days. When I had part of my upper right lung removed due to severe infection, my friends and family were the ones who encouraged me to keep going. When I got a blood clot in my lungs and was on oxygen, fighting to breathe, my family pushed me forward in my recovery.  When I started on Trikafta and saw my health stabilize, my support system was by my side, cheering me on. 

(Image above: CF Walk 2009)

Cystic fibrosis can be an incredibly isolating disease. Between the invisible nature of the disease (ie “But you don’t look sick”) and the infection control precautions put in place to keep people with CF away from each other, it can sometimes feel like you’re on an island by yourself. But during CF awareness month, we come together to talk about our disease, discuss what we’ve learned living with a chronic illness, encourage one another, and share glimpses into our daily lives. This one month, we are a little less alone.

(Image above: CF Walk 2025)

To my fellow friends with CF: This CF awareness month, I hope you all feel the love, support, and encouragement you need to keep going, and I hope you know how strong you are. 

And to all who support us: Thank you. Your support is invaluable, and sometimes, it’s exactly what we need to keep breathing.