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.
Being on coronavirus lockdown has taught me to lower my expectations and be grateful for being able to be with my family.
May 27, 2020
What I Did When My Date Told Me He Had CF
How I Found Meaning and Purpose in a Late CF Diagnosis
There is no greater fear for a parent than the inability to protect our children from pain and suffering. A few days after our only child, Zach, was born, those fears were realized when we received the unsettling news that Zach was born with cystic fibrosis. Those first few weeks were agonizing as we were paralyzed with fear regarding our family's future. We assumed each day would get progressively worse as the disease ravaged our son's body and consumed our souls.
However, that initial visceral reaction was misguided. What we found was the disease just became another part of our family and we lost ourselves in Zach. His milestones, personality, and laughter were infectious and, as a result, we thrived.
Six years later, we are now confronted with new fears in the face of a relentless virus, which targets those most vulnerable -- like all of those who battle CF. The human mind is reactionary and tends to fall into bad habits during times of excessive
stress. I've been on an emotional roller coaster ever since we first pulled Zach out of school on March fifth. On that day, we received communication from the school district that students and teachers had come in contact with someone who had tested
positive with the novel coronavirus (the virus that causes COVID-19) and, a week later, our school district was shut down indefinitely. Complicating matters is the economic uncertainty and uncompromising workload thrust upon me over the past few months.
As we adjusted to our new normal, it was critical that Zach understood the severity of COVID-19 to establish necessary safeguards to protect him from the virus.
Telling a 6-year-old that he can no longer play with friends, attend school, or do all of the fun activities he was accustomed to felt like a daunting task. We found that being honest and transparent with the situation created a sense of calm and understanding
about how we could best protect ourselves.
One benefit of living with CF is that all of the suggested precautions of handwashing, sanitizing everything, and physical
distancing is how we generally live our lives every day. As a result, there wasn't much of a learning curve -- just an adaptation on assimilating our behaviors with society as a whole. Even at such a young age, Zach understands -- better than most
adults -- what he needs to do to protect himself against COVID-19.
Through it all, the isolation, the global health crisis, and resulting economic fallout, there has been one constant, which has helped soothe my psyche and provided much needed stability -- my family.
More specifically, what has kept me grounded through one of the most demanding times in my life has been my son's innocence and perspective on the world. There have been so many moments of gratitude that I've been able to share with him while the world
outside is in chaos. I've enjoyed teaching him math each day on our chalkboard wall between calls with clients. I've appreciated eating three meals a day with him and laughing at his silliness. Each week, I bring our movie screen into the living room
and we watch family memories from a projector. It has been uplifting to see Zach's curiosity as he watches himself; moments that were etched in my memory yet are new to him. My days have been filled with moments like these: LEGO®, tag, yoga, experiments,
cooking, and making home movies and memories of our own, which I will always cherish. My hope is that, when time passes and I recall these trying days, what will matter most is the love my family was able to share with each other.
In a normal CF environment, those with CF and their caregivers spend an inordinate amount of time on medications, therapies, and procedures
to stay healthy. Due to COVID-19, CF caregivers are now also adding homeschooling, adjusting to new work environments, and struggling to procure basic groceries to their everyday regimens. To best navigate these unique times, we have lowered expectations
of ourselves and have just captured some of the positives that come with being locked in our home with our family for months. This, too, will pass, as every storm runs out of rain.
As a society -- more specifically, the CF community -- we will learn from this crisis and grow in ways we can't yet fathom.
Sometimes it's as simple as being a better father and reconnecting with the imagination of a child. At least that's been my experience the past few months, and I know we will help each other through these uncertain times because that's what families do.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Father of a child with CF
Nick is father to his son Zach, who has cystic fibrosis. A graduate of Drexel University, Nick works as a Private Banker at PNC Wealth Management. He is a national advocate for the Cystic Fibrosis Foundation, participating annually in the Foundation’s largest advocacy event, March on the Hill. Nick and his wife Gretchen formed a National Great Strides team that walks and fundraises in Doylestown, PA; Chicago, IL and New York City, NY. Last year they were the top fundraising team at their local Great Strides walk in Doylestown, PA. Nick, Gretchen and Zach live in Doylestown, PA. You can follow him on twitter @ZachsCrewCF.
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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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