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.
When my wife convinced me to undertake a hike up to Angel's Landing, I pictured the physical challenge of it, not the friendship we would develop with another couple on the way up.
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My wife, Laura, loves being outside. She runs five miles every single day -- it's insane. So naturally, for her birthday she wanted to take a trip to Utah to hike a bunch of random rocks. Her birthday is in June, which is also insane because it's outrageously
hot everywhere. Laura is definitely a great source of encouragement, support, and motivation when it comes to getting active, especially knowing that my happy place is inactivity.
Laura had always told me how beautiful Angels Landing is and how badly she wanted me to see it with her. Fair enough. Sounds simple. I've seen pictures and heard the stories of how she, her father, and her brother-in-law made the climb. It wasn't until
the week before our trip I actually YouTubed this hike. Angels Landing is in Zion National Park. A 5.4-mile hike round trip, you walk along a narrow stone path that reaches a top elevation of 5,790 feet. Oh, and at one point, there is a chain you
hold onto for dear life because if you make one wrong step, it's 1,604 feet straight down. So, by this time I was a bit hesitant to say the least.
Fast forward to Sunday. We had been in Utah since Friday and we were trying to find the perfect (least busy) time to do this hike. We mentioned to a local while getting coffee that we were going to go that afternoon, “OMG please don't, it's too hot. You'll
die!” Well, that was good enough for me, so we planned to wake up super early Monday morning (4 a.m.) and take this thing on.
We arrived at Zion National Park around 5:30 a.m.-ish and got in line. Yes, there is a line for the shuttle that takes you to a place where you can experience life as it was in the 1600s and climb stuff for no reason. We waited about an hour and a half
to get on the shuttle. About 10 minutes later, we were dropped off at The Grotto, which to me sounded like it was a fancy way of saying “The End.” We jumped off the shuttle and started walking this trail.
They always start super easy, and then for no reason it feels like you're walking straight up. I don't use the incline on my treadmill because life can already be difficult.
Laura was very sweet, encouraging me to take breaks and reminding me we had all day and didn't have to rush. 'That's nice, sweetie,' I thought, 'but I don't want to be climbing ALL day.' Also, I walk too fast for my own good. Nevertheless, we took several
breathers. Stopping along the path and watching other people breeze on through wasn't that great for my self-esteem. I like to think that even with cystic fibrosis and 70 percent lung function,
I can push myself just as hard. However, being almost 33 with CF and 70 percent lung function sings to me a different song.
Hiking at with new friends at Zion National Park. (From left to right, Micah, Laura, Peyton, and Thao)
During one of our breathers/banana snack breaks, we happened upon a couple on their honeymoon, Peyton and Thao. Oddly enough, Peyton was taking a breather as well as he suffers from severe asthma. After learning they both were pharmacists, the conversation
quickly turned medical and I told them had CF. As I opened my mouth to give a lengthy explanation as to what CF is, Thao told us that she had worked at a CF clinic in Oklahoma! Crazy, right? I felt more encouraged on the hike knowing someone understood
and worked in CF and that her husband was being similarly challenged. Jokingly, I said it made me feel better that two pharmacists and one with asthma were on the way up to the top with us. We started to continue with this punishment -- or hike as
some call it.
Peyton and Thao said, “Well, if you're ready, we will stick with y'all,” as we all walked together. Then, Laura and I both turned to them and said, “Y'all don't wait for us. We don't want to slow you down.” We really appreciated the thought, but knew
it would be a slower journey with us and figured they were just being considerate. Without missing a beat, they assured us that it was okay.
Peyton has to take breaks and take it slow, so it made sense to them to hang with us. Normally, I'd feel really awkward about this, and maybe prideful because I'm a grown-ass man and don't need a caretaker (other than Laura). However, with their offer,
that thought never occurred to me.
I got the sense that they weren't just offering to hike with us out of concern, but because they enjoyed our company. I mean, between periods of heavy, old-man breathing, I did provide them with plenty of jokes along the way. So, we huffed and puffed
and stopped and guzzled water and enjoyed some Uncrustables (PB&J, found in your local grocer's frozen food section). We survived Walter and his Wiggles, a section of the trail with 21 steep switchbacks. We conquered Scout's Landing (the 2-mile point)
and we scaled the 500-foot, vertical, deadly spine of this rock. The whole way up, we clutched the chain handrails with the hope that we were not going to meet the Lord that day. With Peyton and I huffing and puffing like 80-year-olds, the ladies
were constantly checking on us.
We shared so many laughs, not to mention every drop of water we had left. I will never forget their kindness, selflessness, or friendship. Since Peyton and I both were carrying our inhalers, we aptly
regarded our duo “Buterol Bros” and the four of us would forever be Team Albuterol!
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
I am a 32 year old, living a great life in Dallas with my wife, Laura, and our cat baby, Hugo. I work full time for Firewheel Christian Academy as the marketing director. When I am not working, I enjoy jogging, watching Netflix, and spending too many
hours on Vogue's Runway app looking at current and old fashion shows. I also love music and playing guitar. I was an honoree for Dallas Finest 2020 put on by the Cystic Fibrosis Foundation, and I am member of the Patient Advisory Board at the University
of Texas Southwestern in Dallas. You can follow me on Instagram or email me at firstname.lastname@example.org.
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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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