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.
It's been a whirlwind year since my son was born and diagnosed with cystic fibrosis. Despite the surgeries, hospital stays, and challenges of living with the disease every day, I'm thankful for the people who helped pave the way.
June 18, 2021
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Happy Father's Day! My wife and I are parents to a beautiful 4-year-old daughter, Ella (who does not have CF), and our son, J.J., who just celebrated his first birthday. As I was reflecting on my first year of having a son with cystic fibrosis, I couldn't
help but think back to my 8th grade choir asking, “How do you measure, a year in the life?”Since so much has happened this year, I thought I would attempt to measure it through what we have learned, and how we have loved.
The first thing I learned as a father of a child with CF was that I did not know anything. I did not know about the disease, how it could impact someone, the complications that could come along with it, or how to treat or care for someone with CF. Thankfully,
our care team (shoutout to the U of Iowa!) has been great getting us up to speed and helping us understand all that we are dealing with.
Last year, we were still sitting in the hospital, awaiting the day we could bring J.J. home. Since that first stay, we can easily measure this year in terms of how much
time we spent in the hospital. J.J. has had five hospitalizations: three surgeries, one COVID-19 case, and two staph infections in his blood stream. His most recent surgery removed the central line they had used for feeding and medicine, replacing it with a G-tube in
As hard as each hospital stay has been, one of the funniest moments in our CF journey made us feel like first-time parents again. J.J. had his first fever after the removal of his central line. I think we called our care center seven times and spoke to
three different departments. But as it turned out, it was just a normal teething fever.
One of the hardest lessons I have learned is how hard my wife works. My wife has a great medical understanding and has been a patient teacher - apparently, I am a slow learner. While other families have been great resources for us, she has carried the
lion's share of the medical knowledge and responsibility. She could do a sterile dressing change in our kitchen -- as long as I could hold J.J.'s attention. She taught me to help with dressing changes, hook up a medication pump for a central line,
clean a G-tube site, do physical therapy, and give our son medications via many different methods. Believe it or not, none of those skills were on my bucket list. I resumed working this year, while she has stayed home to be J.J.'s primary caregiver.
The routine does not stop when I am tired, when I am home, in the middle of the night, when I travel, when I am at work. I am so thankful for all my wife has done for our family and she (almost) never complains.
This year I have also learned the value of well-funded research. Not just for cystic fibrosis, but for all diseases. We are waiting for the day J.J. is old enough for modulators.
We realize there are some who do not yet have the same treatment options because they have mutations that won't respond to them. We want to be a part of their hope -- the same hope that they have given us!
We are thankful for the work that has been done while we lived our lives blissfully unaware of a looming threat. Those who have paved and traveled the road before us have given our family so much hope.
We have not skipped a fundraiser and will continue to help do our part. We can also measure our efforts here; we raised just shy of $10,000 in our first two fundraisers, and this year is not over yet!
We know we have a long road ahead; we just began treatment for our first bout of pseudomonas at home with our new routine. Of course, it is a rare form of pseudomonas that doctors and researchers are less familiar with. But other than his invisible ailments,
J.J. is a great baby. He's gaining weight, running around with his big sister, and has the funniest laugh.
I have learned that our village is populated with more people than we knew, and they are more helpful than we could have imagined. We would like to acknowledge our parents who do everything they can to help -- we are blessed to live close to them. (This
was partly intentional, now that Grandma is our neighbor!)
I was told by a friend with CF when we got our diagnosis a year ago that, “More than anything, this diagnosis is love.” That is how we prefer to reflect and measure our years. Measure in love!
Interested in sharing your story? The CF Community Blog wants to hear from you.
Father of a child with CF
Jake’s son, John or “J.J.”, was diagnosed with cystic fibrosis shortly after his birth. Jake, a graduate of the University of Northern Iowa, works full time in senior living and sells residential real estate. A former rugby player, he can still do the
splits when properly motivated. His family fundraises for Great Strides and participates in the Iowa 65 Roses challenge. Jake lives in Davenport, Iowa, with J.J., his wife, Tara, and daughter, Ella. You can reach Jake by email at firstname.lastname@example.org and Facebook.
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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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