Reducing Stigma Around CF

As an adult with cystic fibrosis, I know I am blessed to be healthy right now. I find joy in spreading awareness of CF and encouraging others to follow their dreams no matter what.

Sept. 7, 2022 | 5 min read
Alyssa Buechner
Alyssa Buechner
Alyssa Buechner on the set of Channel 15 News

My parents found out that I had cystic fibrosis when I was 3 days old. They learned that I had a double F508del mutation, the most common CF mutation. The words were heartbreaking for my mother because she had a friend in high school who died from CF when she was 16 years old. My mother was terrified that I would have the same fate. She decided that she was going to train me to fight and beat this illness and change the stigma surrounding CF. 

As a child, I thought I lived a perfectly normal life. It was part of my daily regimen to wake up at 5 a.m. to do my vest/breathing treatments and take multiple medications before getting on the school bus. I had a great group of friends and was very involved in extracurricular activities. I struggled with a few lung infections and had trouble gaining weight but — other than that — not much could slow me down. I was president of my 4-H club, vice president of Future Farmers of America (FFA), vice president of my class, and captain of my softball and basketball teams. Besides the doctor's appointments every one to three months, everyone in my school, including my teachers and sport coaches, hardly noticed that I had a chronic illness. 

My life was good, and my health was even better. That is why I was completely caught off guard one day when a group of my peers approached me, frightened. They asked me if — and then when — I was going to die. They had learned that CF was a fatal disease after a girl in their biology class had done a presentation on cystic fibrosis. After learning what her presentation contained, I noticed that a lot of the information she used was out of date and extremely inaccurate.

That was the first time that I realized how undereducated the public was on cystic fibrosis and that I wanted to change that.

Shortly after that encounter with my peers, I prepared a long presentation on cystic fibrosis and shared the proper information, statistics, and medical advancements that the CF world was experiencing and the progress that was underway. I also created a group chat for people with CF and their advocates that we could use to support each other and serve as an educational outlet. 

I wanted to create a positive resource for people with CF and provide a glimmer of hope to those who were not as fortunate as me. I wanted them to know that they were strong and that we would, as individuals, define cystic fibrosis, and not let it define us. In June of my junior year of high school, I was asked to share my CF story on Channel 15 News in Madison, Wis. The reporters wanted to know how my lifestyle and outlook on life was different than someone without CF. I was eager and excited to spread awareness of CF and hope for a cure. I was also ecstatic to have so many people learn about what I was doing, and to see my family, friends, and community support something that was so special and close to my heart. The segment was a success. I felt that I was able to educate a large audience about CF and share all the good news within the CF world.

Today, I continue to spread awareness by sharing my story. I still meet people who gasp when I talk about my condition and express sympathy. Every time I hear that, I smile and laugh. I tell everyone the same thing: “I am glad that God chose me and that he knew I was strong enough to overcome it.”

I am becoming the person whom I have always wanted to be. My lungs are operating at 122%. My weight and diabetes are well managed. I will graduate from the University of Wisconsin-Platteville in three and a half years with a business and Spanish degree, following a full-time job set up after my graduation. I also am currently a part-time clothing model, and working on starting a clothing business of my own. 

I am making sure to enjoy every moment that this great world gives me. I want others to know that they shouldn’t let CF — or any inconvenience — hold them back. I want to inspire people to pursue their dreams and to not let anyone or anything stop them from achieving those dreams. I refuse to let CF hold me back and control my life. I am blessed to have the best support system, a strong relationship with God, and I have access to all the tools I need to ensure success. I am so excited to see what is ahead for the cystic fibrosis community and to see all that we will still achieve. 

Interested in sharing your story? The CF Community Blog wants to hear from you.

This site contains general information about cystic fibrosis, as well as personal insight from the CF community. Opinions and experiences shared by members of our community, including but not limited to people with CF and their families, belong solely to the blog post author and do not represent those of the Cystic Fibrosis Foundation, unless explicitly stated. In addition, the site is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.

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Alyssa Buechner

Alyssa has a degree in Agbusiness and Spanish. She was the first-ever cystic fibrosis student to go to the University of Wisconsin-Platteville. She grew up on a small farmette in midwestern Wisconsin with her parents and three siblings. She is a huge advocate for the CF community, and she is passionate about sharing her story with others to help educate the public and other individuals with CF. She writes to share her positive outlook about CF and to inspire and motivate others.

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