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.
Although cystic fibrosis is often considered to be primarily a lung disease, it is actually so much more.
August 1, 2018
How My Friends Helped Me Survive a Second Lung Transplant
Explaining My Port to Airport Security
When it comes to explaining cystic fibrosis, my opening line is usually, “I have cystic fibrosis. It's a genetic lung disease.” I feel this covers the bases -- I am not contagious and my lungs are the main source of the problem. However, as I have gotten
older, my CF care team has grown, and I have realized that CF affects much more than just my lungs.
Although the lungs are often the focus of the disease, CF affects people in multiple ways and many other concerns can develop. For example, I was born with meconium ileus and spent 28 days in the neonatal intensive care unit (NICU).
Bowel complications became an issue again when I
was 19 and went on a trip with my best friend to New York City. The day before we left, I was feeling very sick, which we attributed to nerves. After a miserable two-day trip and a flight change to come home early, it was official: I had a bowel obstruction.
I spent the next month in the hospital recovering from surgery.
Since then, I have had three more bowel obstructions that each required extended hospitals stays but, thankfully, no surgery. I have gone to the emergency room thinking I had another bowel obstruction only to find out it was actually kidney stones. I
still have kidney stones today even after having lithotripsy to remove some of them. Sinus surgery is also very common. I've had over 10 sinus surgeries to remove nasal polyps.
While each of these “complications” relate back to my CF, they are not what usually comes to mind at the time of diagnosis and disprove the myth that CF is “just a lung disease.”
As evidence of just how many areas CF can affect, my mom even started a spreadsheet listing all my medical procedures, medications, and hospitalizations that I bring to all of my appointments. It has been a lifesaver, and most doctors and nurses are so thankful that I have this. Not only can it be frustrating
to repeat the same thing over and over, but I can also demonstrate just how complex the disease can be and let them know which aspects of my health to consider before making any treatment decisions.
Because of my CF, I will never have a doctor that can be a “one-stop” shop. My current CF care team consists of a pulmonologist, otolaryngologist, urologist, gynecologist, dietitian, gastroenterologist,
and more. Each doctor has an area of expertise, and it is so important that they work together to determine the best diagnosis and treatment plan for me. The
doctors you surround yourself with can have a huge impact on how you feel, and in my experience, having a close relationship with them is crucial for making you feel comfortable and involved in decisions.
If there's one thing I've learned from the CF community and my care team, it's that my illness is not the same as everyone else's. In fact, I may have symptoms or complications that are completely different from what someone else with CF is experiencing.
It is important not to label CF as only involving certain symptoms or side effects because it can be much more. Each patient is dealing with different and ever-changing concerns but having doctors who take an interest in your well-being can help you
overcome the new obstacles.
Adult with CF
Jennifer was diagnosed with CF at birth. A graduate of Marshall University in Huntington, W.Va., with a bachelor’s degree in management and marketing, she now lives in Barboursville, W.Va., and works full time as a Senior Events Manager at a civic arena. In her spare time, she enjoys spending time with her family -- especially two special nephews -- and her fiancé. Jennifer has a very supportive family, whom she largely credits with helping maintain her health.
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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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