Learn about cystic fibrosis, a genetic disorder that affects the lungs, pancreas, and other organs, and how to treat and live with this chronic disease.
CF is a rare genetic disease found in about 30,000 people in the U.S. If you have CF or are considering testing for it, knowing about the role of genetics in CF can help you make informed decisions about your health care.
If you or your child has just been diagnosed with cystic fibrosis, or your doctor has recommended testing for CF, you may have many questions.
Diagnosing CF is a multistep process. A complete diagnostic evaluation should include a newborn screening, a sweat chloride test, a genetic or carrier test, and a clinical evaluation at a CF Foundation-accredited care center.
Raising a child with cystic fibrosis can bring up many questions because CF affects many aspects of your child’s life. Here you’ll find resources to help you manage your child’s daily needs and find the best possible CF care.
Living with cystic fibrosis comes with many challenges, including medical, social, and financial. By learning more about how you can manage your disease every day, you can ultimately help find a balance between your busy lifestyle and your CF care.
People with CF are living longer, healthier lives than ever before. As an adult with CF, you may reach key milestones you might not have considered. Planning for these life events requires careful thought as you make decisions that may impact your life.
People with cystic fibrosis are living longer and more fulfilling lives, thanks in part to specialized CF care and a range of treatment options.
Cystic Fibrosis Foundation-accredited care centers provide expert care and specialized disease management to people living with cystic fibrosis.
We provide funding for and accredit more than 120 care centers and 53 affiliate programs nationwide. The high quality of specialized care available throughout the care center network has led to the improved length and quality of life for people with CF.
The Cystic Fibrosis Foundation provides standard care guidelines based on the latest research, medical evidence, and consultation with experts on best practices.
As a clinician, you’re critical in helping people with CF maintain their quality of life. We’re committed to helping you partner with patients and their families by providing resources you can use to improve and continue to provide high-quality care.
As part of the Cystic Fibrosis Foundation's mission to help improve the lives of people living with cystic fibrosis, the PSDC initiative taps the CF community to inform key efforts to support the management of daily care.
Your cystic fibrosis care team includes a group of CF health care professionals who partner with you to provide specialized, comprehensive CF care.
Many people living with cystic fibrosis and their families face complicated issues related to getting the care they need. Cystic Fibrosis Foundation Compass makes sure that no one has to do it alone.
CF Foundation Compass is a service that helps people with CF and their families with navigating insurance options, connecting to legal information and experts, finding available financial resources, and tackling other life issues.
CF care team members are paramount in providing highly specialized care to people living with CF. CF Foundation Compass can help by serving as a strategic ally for care teams, so team members can focus on their patients’ care.
CF Foundation Compass can help you navigate insurance, financial, legal, and other issues you are facing. Use this online form to start your conversation with a Compass case manager today.
The Cystic Fibrosis Foundation is the world’s leader in the search for a cure for CF and supports a broad range of research initiatives to tackle the disease from all angles.
The CF Foundation offers a number of resources for learning about clinical trials and treatments that are being developed to improve the treatment of cystic fibrosis.
Our understanding of CF continues to evolve as scientists study what causes the disease and how it affects the body. These insights drive the development of new and better treatments and bring us one step closer to a cure.
Researchers, supported by the CF Foundation, have made tremendous advances to improve the health and quality of life of people with CF. We are committed to providing the tools and resources you need to continuously build upon this work.
I have faced a lot of ignorance about my cystic fibrosis -- even from people whom I thought were my friends. I have learned not to take it personally. I just educate who I can and move on.
June 15, 2021
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When you are diagnosed with cystic fibrosis, you are not aware of how it will affect you socially; your focus is on the medical issues related to your lungs and pancreas. I discovered how difficult it is to be accepted by your peers when you have a chronic
disease. It's even harder when you have an illness that no one understands.
My classmates throughout elementary and middle schools knew that I had an illness because I was always sick and taking a lot of medication -- I did not talk about it and it was never really brought up by anyone. The only person that I could relate to
was my best friend, Julie, who I met in preschool. Julie has asthma and a severe milk allergy causing her to be hospitalized if she eats anything that has milk or is cross-contaminated. At that time, people didn't believe that her milk allergies existed
and would always make fun of her for bringing her own food to parties.
Carly (left) with her best friend Julie.
I was lucky enough to not face any stereotypes when I was younger, however, my mom dealt with a lot of ignorance from parents who did not understand CF and genetics. When my mom went to school events,
people would ask her, “What's wrong with your daughter? She's always coughing and sick,” and wanted to know if I was contagious.
Although my mother tried to explain what CF was, she would still get snooty comments about my health. One mother even said, “Don't worry she'll grow out of it.”
A couple of parents were jealous that I got special treatment because I was hospitalized and could not go to school. These ignorant comments were not really directed toward me until I went to high school.
In May of my sophomore year, I had to have a back surgery to correct scoliosis -- the curvature in my spine -- because I was in so much pain. I told my high school friends that I was going to miss the end of the year because I needed surgery.
During that surgery, my lungs collapsed, and my pulmonologist put me on IV medications for my CF. I was expecting my friends to call or text me when I was in the hospital to
see how I was doing, but out of a friend group of seven people, only one did. Once I got home, I was in a severe amount of pain and was depressed because none of my friends wanted to talk to me or include me in things that they were doing.
Three months after surgery, I ended up back in the hospital because I had pneumonia. After being on IV medications for about three weeks, I started my junior year on my 16th birthday, Sept. 13, missing the first week of school. My friends at
the time were surprised to see me in school and forgot it was my birthday until later in the day. They made fun of me for being upset and made memes out of my face.
As soon as my mom picked me up, the first thing I did was cry because of the back pain and feeling like I was nothing. All I kept thinking was, “This is why I don't tell people that I have CF; nobody ever understands.” Although we did not go to the same
high school, Julie -- my friend with the milk allergy -- was the only one who constantly checked up on me and even texted my mom to make sure I was OK.
During my junior and senior years, I continued to struggle with my CF health, and my classmates began to leave me out of things. In one instance, I was hospitalized in October and missed a month and a half of school. Before I was hospitalized, my friends
and I were talking about going trick-or-treating on Halloween. Although I was still on IV medications, I would have been able to go. However, my one friend uninvited me because I was sick and did not tell anyone else in my friend group. In addition,
I did not know that they were having a party until I saw it on Snapchat, and when I did, I was so angry and hurt. I ended up saying something to her, and she apologized, but it didn't seem like she even cared. It seemed like when I wasn't sick, they
were my friends, but if I was out for a day, it was like I didn't exist.
I was so excited when I was accepted to The George Washington University in Washington, D.C., and was looking forward to a fresh start away from home. I was still in contact with my high school friends and was sharing some stories of college life in D.C. My high school friends were a little shocked that I was acting like a normal college freshman by going to parties and dating. One of my high school friends ended up texting me that the rest of the friend group wanted to have an “intervention”
because they believed that I was acting “immature toward my health.”
I realized that I cannot let ignorant people affect me, especially the ones who try to define me by my CF.
During my freshman year of college, I was in a relationship with a guy for about three months. I had briefly told him that I had cystic fibrosis, but he never showed an interest in understanding it. Not long after, he thought it would be funny to list
all the things that were “wrong” with me -- one of them being my health. This honestly really hurt me because I was so careful to hide my CF throughout my life and when I told the one person I trusted at the time, he just made me more insecure. Needless
to say, I ended it, and I learned not to let anyone define me just by my health.
During winter break in 2019-2020, my college friends were texting in a group chat and I was not responding because I was dealing with the side effects of taking Trikafta® -- severe coughing and hives. They ended up asking what was going on, and I told them about my CF. My dorm neighbor said that one of his teachers had CF, so it made me hopeful that I wasn't going to be treated like I was in high school.
After the horrible side effects had passed, I was doing really well. In February 2020, I got the flu which surprisingly wiped me out for only a week. At the time, my college friends knew that I had the flu and offered to help me in any way that they could.
I was starting to feel better, and my neighbor asked me if I wanted food and of course, I accepted. He knocked on my door, and as soon as I opened it, he sprayed me with Lysol and then handed me the food and ran back to his room. I did not even know
what to say. Before he knew I had CF, he would make jokes about me coughing all the time and constantly say that I was germy, but this was over the line. I just could not deal with this anymore and stopped talking to him. About a month later, my school
had everyone leave campus because of the pandemic.
I have learned that it doesn't matter if you are healthy or not, if you are living with CF or any other rare disease, there may be people who will judge you for it. When I was young, I never understood why people would mistreat me and say hurtful things.
I was always very discreet about my conditions; I've even lied to some people about my past because I was afraid how they would react. If someone were to treat me like that now, I would just look at them and laugh because they fear what they don't
know and are afraid to learn more. My best friend, Julie, and I understand what each other has been through, and she has helped me through some of the worst experiences of my life.
With CF, they always say having a support system is important, but finding that support system is the hardest thing to do, especially when people try to look down on you or treat you like you're not a person.
The most important thing I learned is not to take it personally. They don't understand what we go through with CF. Just educate them about CF and move on.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Carly is a member of the Class of 2023 at The George Washington University in Washington, D.C., majoring in Business Analytics and Innovation and Entrepreneurship with a minor in theater design. Carly was diagnosed with CF when she was 2 weeks old and
was later diagnosed with Chiari malformation and scoliosis. Carly’s parents helped raise money for local CF patients in need of lung transplants. Carly has participated in Great Strides and also received a Make A Wish. Carly lives with her parents,
Deborah and Stephen, three dogs, and two hamsters. You can follow Carly on LinkedIn or Instagram.
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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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