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.
Just two years ago, I would have thought you were crazy if you told me I would be working successfully at a physically demanding job at a goat dairy. Now that my health has improved on Trikafta®, I am able to show up for work at 5 a.m. and handle the rigors of this job despite my cystic fibrosis.
October 13, 2021
How My Younger Sister Became My Role Model
Letting Go of People Who Didn’t Accept My CF
I was diagnosed with cystic fibrosis when I was 15. As you can imagine, finding out that I had CF was a shock. I was scared and had no idea what this meant for my life. Would I be able to live a “normal” life? When would I get sick? Would I progressively
get worse and have to stop doing the things that I love? These were all very real thoughts and fears that were always on my mind.
As I continued through high school my battle with CF became more real. Up until my junior year I had been asymptomatic. I didn't even know what CF really looked like for me. However, in February 2017 all that changed when I had my first sinus surgery
due to B. cepacia. Going into my senior year, I was on more medications than I had ever taken in my life, constantly tired, and going to the doctor every three months, if not more frequently. Colds lasted for weeks, and the seasons changing became so hard on my body. I was starting to come to terms with this “new” life
that I was living.
By November 2019, I was very unhealthy and barely able to manage work and school. I was faking it 'til I made it to an extreme level. I was putting on a strong face, but deep down I was praying for a miracle for me and so many others with CF. Without
my faith in Jesus, I would have been in a very dark place at that point in my life. I just wanted to be a normal teenage girl.
It was then that I found out that Trikafta® was approved by my insurance.
This was the biggest answer to many prayers and truly gave me hope. As life moved on, I was no longer fearful of my future, rather I was excited about what lay ahead of me.
I had dreams, and I was determined not to let CF get in the way of them.
I got married in the summer of 2020, and a few weeks after getting home from our honeymoon, my husband and I set off for the University of Illinois so I could continue my college education.
While on our honeymoon, I got an email that a goat dairy a few minutes from where we were going to be living was hiring. After talking with my husband, I decided to apply. I knew that this was going to be a very physically demanding job and meant
I had to stay on top of my health. If I didn't, this job would not be an option for me. Yet again, I was determined to not let CF define me.
I report to work at 5 a.m. when I am milking. To do all my morning treatments and get to work on time, my alarm goes off at 4:15. I get up, do my treatments, and then I am off to work. I head out to the barns, wake the girls up from their beauty sleep,
and lead them into the holding pens. Then, they are led into the parlor and fed a delicious grain breakfast that is formulated specifically to them. I hook them all up to the milking machine. Once they are milked out, they get their fair share of
morning cheek scratches and cuddles before they are sent off to graze in the luscious pasture behind the barns.
After repeating this eight times -- we can milk 14 girls at a time -- milking is completed, and there are cleaning and chores to check off the to-do list. I clean and sanitize the milking parlor, and then head back outside to feed the kids (goats born
in spring 2021) and check on the bucks (male goats). After all the cleaning and chores are done, then I can catch my breath for a minute until the next thing on the to-do list needs to be accomplished. There are many factors of my morning on the farm
that can be concerning for someone with CF.
But, I wouldn't trade my job for anything in the world. It may take extra time behind the scenes for me to stay healthy and do this job, but this job has taught me so much.
There are days it makes me tired, and I must take a step back to rest, even though I don't always want to. But having a job as a farmhand while living with CF has taught me so many things. If I could choose, there are three main things that I want others
to know and learn from my experience. The most important thing my job has taught me is that I can do anything I put my mind to. My diagnosis does not define me. Yes, I may have to do things differently or take breaks more often; however,
at the end of the day, I love my job, I am healthy, and I am doing something I would have never thought possible. I have a cystic fibrosis diagnosis that tries to stand in my way. You may not have a CF diagnosis, but whatever is standing in your way,
go around it. You are strong. You can do anything you want to do, no matter how it looks on the way there. This is your journey -- make it your own.
The second thing that I want others to know and learn from my experience is to slow down when needed. Every few days at the farm, we walk the milking goats out to a brand-new section of pasture. That section is full of beautiful, luscious, green alfalfa,
grass, and all the things that goats love. As we are approaching new pasture, there is a pep in the girls' step as they approach their new oasis. They walk in and stop for a few moments to take it all in before going out to eat and produce milk. The
girls always stop to take in the pasture before getting to work eating and producing milk. I stop with them and take it all in -- the smell of fresh grass, the sound of the wind blowing through the tall blades, the munching of happy goats. In that
moment I am completely at peace. There is no work to be done, and I am not thinking of my health, work, or anything that may cause stress. We live in a “hustle” culture. However, there is no need to hustle all the time; stop and smell the roses --
or in my case the goats.
If you would have told me two years ago that I would be working successfully on a goat dairy and have a very physically demanding job, I would have laughed in your face. Little did I know, my prayers would be answered when I was able to start taking Trikafta.
Trikafta has completely changed my life. I still get tired, but it is completely manageable. I feel better, and I have more energy than I ever have before.
Faith and modern medical discoveries are the sole reason I can have the job that I do.
The third and final thing I hope people learn from my experience is to have faith in something and appreciate the research that people are doing. It is the only way to have hope on this crazy journey.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
I live in Champaign, Ill., with my husband, CJ, and our two dogs, Tucker and Poppy. I attend the University of Illinois and am currently finishing up my bachelor’s degree in Animal Science. I plan on pursuing a master’s degree in Small Ruminant nutrition
after graduation. I work on a goat dairy milking goats and love every second of my job. My husband and I love to travel and take every chance we get to explore new parts of the country. I love to make new friends and connections. Feel free to reach
out to me on Instagram, Facebook or email.
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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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