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.
For the most part, I have been fortunate with my cystic fibrosis in that I never needed to go into the hospital. But, that all changed in 2008. Fortunately, I was able to start using Kalydeco. My health improved, and I was able to continue my career in radio and TV.
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Before 2008, I had not been in the hospital ever. I was even born at a Grateful Dead concert because my mom and dad were passionate Deadheads. OK, that part is not true. My parents are normal, and I was born in a hospital. But, other than that,
CF has never gotten me. Life was pretty all right. I was married for about a year and just got a radio job.
Then 2008 hit.
Three times in the hospital in the span of one year. I was sweating in my sleep so bad from perpetual infections that I couldn't be in the
same bed as my new wife. It's embarrassing to use bedwetting sheets when you're 27.
And what was I supposed to do at this new job at a Christian music station?
Ryan with his wife Kaity and children (left to right) River, Sunny, and Sinjin.
I had been working in TV since 2004, which was very enjoyable, but it was all behind the scenes. Now, in radio, I got to be “the personality.” Fun! And, since I wasn't exactly bathed in the culture -- I knew one Christian artist when I started: Steven
Curtis Chapman. The rest of the time, I felt like I was saying, “That was the new song Glabla from Hobie and Blabble” -- it was a great experience to learn why people listen to Christian music in real time. But, all of a sudden, I was having trouble
breathing -- let alone talking, and certainly not laughing -- and often found myself in an irrecoverable coughing fit.
So, thank God, I got to pre-record my talk breaks and could still make it work -- although during allergy season there were days where it barely did. Even more so, thank God for the Kalydeco® (ivacaftor) study I got into in St. Louis. It was double-blind, so I didn't have any idea
whether or not I was on the drug or the placebo. But I knew from day 1 -- I was on it. I felt that much better instantly.
I even told my research techs, “I'm 100% sure I'm on it.”
“You can't tell us that.”
“Please don't kick me out of the study.”
And, I didn't go into the hospital for another five years -- and only once -- in the last 12 years. That one hospital visit was because we had twins in 2014! I wasn't sleeping much that year, but this new pill had changed everything.
My twins are now 6 years old, and we added a third child who is 3. From 2016-2018, I got to create and host a TV show called, “Song Stage,” on PBS. More important, during that same time, I created a show called, “What It's Like to Die.” It was about individuals
who died and had afterlife experiences. Many heavenly … others not so much. It's a topic that raises eyebrows.
When I get asked why I made, “What It's Like to Die,” I think it's because of 2008.
I really didn't think I had much time left, and that changes you. It makes you think about death and the terrible reality of it.
In fact, if you're reading this, and you think the subject is too macabre for the CF community blog, that's because you've never been there. Lots of CF people have, and we think about it. We get mad. Why do we have to deal with this? Will I get to leave
a mark on the world? Am I even capable?
Here's what I've discovered -- that thinking about life from birth to death is depressing when you have CF. It will probably be shorter than most, and -- even if it isn't -- you'll have a crappier version. But if death isn't the end, then there's a whole
lot to look forward to. And that's probably why I sought out people who went past “the light at the end of the tunnel.” I wanted them to make it more real for me. And they really have.
But there's still the here and now. Right now, I'm working in radio again.
One thing nobody tells you about radio is that every single major studio has this little thing called the “Cough Button.” I've worn mine out.
While I'm much healthier now than when I hit bottom, I still have CF and all the little things you already know about -- like that you sometimes have to think about breathing. Shouldn't breathing just happen? Well, yes, but when you're moving or talking,
you've got to control it, so it doesn't control you, and you have to devote brain-space to it that others don't.
So, I hope I have a long career ahead of me in radio, or TV, or whatever God has in store, but -- the truth is -- I really don't know. Nobody does. CF or no CF. We're all fragile, and we all have an expiration date. The Cystic Fibrosis Foundation and
all this awesome research that's being done have extended that expiration date for some of us with the disease, and for that I'm very thankful.
Don't let cystic fibrosis become your identity. You're more than a defective gene. This life is stupid, but you are made for a purpose.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Ryan is a St. Louis media personality and author of the book, "The Life of Human." His wife is an English teacher and his kids are all riding bikes with no training wheels now.
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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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