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.
My work schedule means I can't spend as much time with my son, Simon, as I'd like. We use his cystic fibrosis daily treatment as father-son time.
June 14, 2019
Keeping Active When You Are Not Feeling Your Best
Why I Decided Not to Get a Lung Transplant
It's a twice-daily dose of respiratory therapy accompanied by Marvel comics meets Power Rangers meets Lego Batman while sitting next to my best bud, Simon. He's a typical 6-year-old thrill-seeker in every way who has to work a little harder in life to
stay healthy because of his cystic fibrosis.
We knew Simon might have CF when he was born. Susan and I learned we were both carriers after the birth of our oldest daughter nearly 13 years ago. Newborn screening revealed that both of our daughters are carriers, just like us. Simon was symptomatic even before the results came back, so, although we were hopeful he wouldn't have CF, we knew the possible diagnosis.
That was the extent of our knowledge of CF.
What we didn't know was everything life with CF would entail. We didn't know that we'd be depositing a tiny packet of salt in at least one bottle of pre-pumped breast milk every day. (Thank you fast-food chains for turning a blind eye when we stashed
a few extra packets in the diaper bag each time we visited.) The necessity of a daily bottle feed was sweet for me. Since Susan breastfed all three kids, I wasn't able to enjoy feeding times with any great level of consistency with our girls. With
Simon, I was afforded the bonding opportunity almost daily.
We also didn't know that capsules of oral enzymes would need to be split and poured into his tiny mouth prior to each feeding. Full confession:
not only did I not know the pancreas was an organ highly affected by CF, I also didn't really know what the pancreas did until Simon.
Simon just started swallowing whole capsules on his own this spring. Pretty good for a 6-year-old in our family; the pre-teen still gags. Bonus: our applesauce budget just got cut in half. Holiday World, here we come!
Although we knew that CF included mucus-filled lungs and difficulty with breathing, we had no idea what respiratory therapy looked like. I remember the early years with the tiny mallet.
I'd take a daily turn, usually in the evening on weekdays since I worked during the day and Susan was at home with the kids. As much as it was a challenging schedule to get behind mentally, hindsight has revealed ways that we've bonded as father and
son probably dating back to those earliest moments. I'd give CF back in a heartbeat, but can certainly see the positive ways we've been shaped by the routine. I wouldn't want to trade any of those moments.
Simon's sisters turned 5 and 6 right after he was born. Having older kids in the home while raising any toddler is a total win. When the youngest's daily regimen includes enzymes, medicines with sterilizations, and lengthy bouts of airway clearance, that win is magnified. When holding a 2-year-old in your lap who's wearing an oscillating vest,
having an 8-year-old around to fetch various things is pretty awesome. Whether their help included bringing the next med-filled neb cup or simply sitting with him, the girls have been involved since the beginning.
As he's gotten older, I'm sure they've enjoyed the added screen time, too. Honestly, screens are one of the ways we keep an active little boy engaged in his treatments without complaining about the regimen. Not our parenting preference, but consistent
health matters more and it does have other benefits.
This year, I introduced Simon to “Star Wars,” starting with the originals, of course. Like other dads who grew up in the '80s pretending to be Luke Skywalker, passing it on was a joy for me. I couldn't have timed it better had I tried. When my boy first
heard the villainous music and Vader's deep voice and breathing sound coming from his mask, Simon was wearing one, too. Simon's just happened to include Pulmozyme.
As a dad, I know the need to be intentional. Every kid has hurdles to overcome. When it's a genetic disease, you're simply able to identify what the issues are -- or might be -- really early in the game.
My work sometimes involves evenings, weekends, and travel. In our daily rhythm, I'll never have the quantity of time with Simon that my wife does. I've learned that it's not about the quantity of time, but the quality of the time we spend together.
I'm enjoying the boy that Simon is, focusing on the man that he will become, and learning to be thankful for tiny blessings amidst a terrible disease. Being plugged into his care and making it a fun part of our everyday relationship is a goal I don't
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Father of a child with CF
Nic and his wife, Susan, live in Nashville, where he serves on the staff of the Rolling Hills Community Church. He's the proud father of two daughters (Lillie Cate & Nora Blake), one son (Simon, was diagnosed with cystic fibrosis in 2012), and a Golden Doodle (Sunny). Nic and Susan serve on the CF Advisory Council at Vanderbilt Children's Hospital and are active Great Strides fundraisers. In 2016, Nic ran his first (maybe only) marathon to raise awareness and funds for the Cystic Fibrosis Foundation. Find Nic on Instagram or Twitter where his posts often include doses of Simon and life with CF.
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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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