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.
I have had two collapsed lungs in three years. Here's what I learned.
September 10, 2018
Your Stories of Random Acts of Kindness
Coping With the Uncertainties of My Disease
I knew I had lousy lungs, but I never expected them to blow out like a tire on the highway. Before 2015, a pneumothorax (collapsed lung) was not in my medical vocabulary and I associated it only with action movies and the Discovery Health Channel, not
with me or cystic fibrosis. I am now far too familiar with the signs, treatments, and recovery stages of a spontaneous lung collapse -- I might even call myself an expert.
In 2015, I was a senior in high school when my left lung spontaneously collapsed, and I was vividly reminded that life is unpredictable. Fast forward to this summer (a rising senior in college) and my body reminds me, once again, that the unexpected can
happen. This time it was my right lung that gave out, randomly, or as my doctor said, “dropped.” Both experiences were complicated and resulted in two-week hospital stays, many chest tubes, and required lung surgery to stop the air leak.
Before my first one, I knew absolutely nothing about pneumothoraces, or their relationship with CF, and that is why I was so afraid when it happened. I did not even know what the symptoms of a collapsed lung were. Was it the sudden inability to breathe?
Nope! I could still breathe, walk, and talk when one lung was collapsed. I felt chest discomfort, tightness, shortness of breath, shoulder pain, and exhaustion -- symptoms that I had experienced before with CF, but not all at once.
In 2015, it took me a few hours of feeling weird before I called my doctor who told me to go to the emergency room (ER) for an X-ray.
This summer, I ended up working an entire shift before realizing something was seriously wrong and telling my doctor I needed a chest X-ray. Those experiences taught me the importance of listening to my body and not ignoring the warning signs. If something
feels wrong, something probably is wrong.
I later learned that CF did not cause the collapses directly. They were caused by a pulmonary bleb rupturing. Blebs are small air blisters that can develop on the lung's surface -- anyone can develop them! Although CF does not cause them, it is thought
to provoke them because of the constant inflammation and irritation of the lung tissue. A bleb can pop randomly, leaving a hole in the lung lining -- yikes! This is what happened to me, twice.
Because a thoracic surgeon repaired my pneumothorax, I
was sent to the thoracic floor of the hospital to recover. I had to be my biggest advocate there as the nurses and doctors, who did not specialize in CF, were making decisions about me and my lungs.
This was difficult when I was on pain meds and wanted to sleep all day, but I used my best judgment and challenged the doctors' orders if they seemed wrong. CF lungs are not regular lungs. They often need extra attention or care. In my experience, the
standard procedure is not always the right procedure for people with CF.
The two lung collapses were very low points in my 21-year life, mainly because of the uncertainty and fear I felt. The immobility and constant pain I dealt with was a nightmare at the time but left me with a lasting appreciation of my healthier days.
It's funny how hardship can lead to a new, uplifting perspective. If nothing else, at least now I have matching scars on both sides!
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Young adult with CF
Hogan was diagnosed with cystic fibrosis at age three and has been smiling, laughing, and coughing her entire life. She is a strong believer in the benefits of optimism and loves spreading enthusiasm and positivity. Hogan grew up on the coast of Maine and recently graduated from the University of Vermont. She is the leader of her Great Strides team, “Hogan's Heroes,” and spends her springs fundraising for CF. Reach out to her on the Hogan’s Heroes team Facebook page.
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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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