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.
Five Feet Apart, a movie about two teens with cystic fibrosis, was released in the U.S. in March 2019. The CF Foundation was not involved in the production of the film. However, we are hopeful that the movie will provide a positive opportunity to increase awareness of CF and the challenges people with CF face living with their disease.
Cystic fibrosis is a genetic disease that causes a buildup of thick, sticky mucus in the lungs. CF causes ongoing lung infections and makes it hard to breathe over time. CF also affects other parts of the body, including the pancreas, and can make it difficult to digest food and maintain a healthy weight.
5 Facts about CF
1. CF is a complex disease with almost 2,000 different mutations. Every experience is different.
2. More than 30,000 people in the U.S. have CF and more than 70,000 have CF worldwide.
3. About one in 35 Americans is a symptomless carrier of the disease.
4. In 1957, a child with CF likely would not live to the age of 5. Sixty years later, half of people with CF born in 2017 are expected to live to 44 or older.
5. There is currently no cure for cystic fibrosis, but there is a lot of hope that we will cure CF.
Five Feet Apart is just one representation of life with cystic fibrosis. CF is a complex disease and the types and severity of symptoms can differ widely from person to person.
As a work of fiction, the film portrays only a handful of individuals' experiences with CF and may be dramatized for the sake of the story. Every person with CF is different and we know that the progression of CF and challenges associated with the disease are unique.
At the CF Foundation, we're focused on highlighting the real lives of people with CF. Visit our blog to read their stories.
If you have CF or are a parent of a child with CF, we want you to feel ready to talk about what you see in the movie.
Germs can spread as far as 6 feet when someone coughs or sneezes, landing on surfaces or in another person's eyes, nose, or mouth. That's why it's important for people with CF to stay at least 6 feet away from others with CF and anyone with a cold, flu, or infection.
For people with CF, being close to others with the disease puts them at greater risk of getting and spreading dangerous germs and bacteria. This is called cross‐infection. Not only are these dangerous germs difficult to treat, but they can also lead to worsening symptoms and faster decline in lung function.
People with CF have developed robust online communities through the use of social media networks and video chatting to forge closer connections in real time without having to meet in person.
Recognizing that no one knows what life with CF is like better than those who live with it every day, the CF Foundation created a host of programs to facilitate meaningful connections among individuals in our community, from virtual events to peer mentoring.
Life expectancy for people with CF has increased dramatically since the CF Foundation was formed in 1955. Today, many people with CF are reaching milestones we never thought possible, such as finishing school, starting families, or beginning careers. However, people with CF still face significant challenges -- including frequent hospitalizations, complications, and treatment plans that can take 2-3 hours a day -- and too many lives are cut far too short.
Based on the most recent CF Foundation Patient Registry data, the life expectancy for people born between 2013 and 2017 is 44 years of age. This means that half of the babies with CF born today are predicted to live to be 44 years old.
A lung transplant is a surgical procedure in which a person's unhealthy lungs are replaced with healthy lungs from a donor. More than 200 people with CF undergo lung transplantation every year.
Although the transplant surgery replaces the damaged lungs, people with CF are still affected by the disease, including complications in their digestive tract and upper respiratory tract, and mental health issues associated with chronic illness. In addition, they are susceptible to a variety of infections that can threaten long-term survival.
Yes. People with CF who have undergone a lung transplant still can get and spread dangerous germs among others with CF because these germs can remain in their upper respiratory system, including the sinuses. Because of the risk of cross-infection, it is recommended that people with CF take the same precautions they took before lung transplantation.
Many transplant centers have different policies about what they consider to be barriers or contraindications to transplant. Although some transplant centers may not accept people with certain health conditions like B. cepacia, others may.
Clinical trials, which test potential drugs and therapies, help researchers understand how potential treatments work in people with CF and whether they are safe and effective. Whether or not the trial is successful, participating in a clinical trial gives researchers valuable information so that they can refocus their efforts on more promising therapies.
As with anything, there are risks and benefits to participating in a clinical trial. Before you enroll, a research coordinator will have a conversation with you and give you an informed consent form that explains the clinical trial in greater detail. This ensures that everyone who participates in the study understands the trial's purpose, how long it will last, the responsibilities of participants, and the potential risks and benefits. In addition, clinical trials undergo an extensive review and safety process, which you can learn about on cff.org.
In many clinical trials that test the effectiveness of a medication, some of the participants receive the medication in question. Some receive a placebo, a pharmaceutical preparation that contains no active substance (a sugar pill) and looks like the drug that is being tested.
People with CF share why they joined a clinical trial on the CF Community Blog:
Living with a chronic disease, such as CF, can be emotionally challenging. Although moments of sadness and anxiety due to the uncertainty of health are normal and may come and go, depression and persistent anxiety should be treated as part of a person's overall health and emotional wellness.
People living with CF -- or who have a child with CF -- experience a great deal of stress. Making time for daily treatments, remembering to take medications, missing out on things you want to do, and being hospitalized for an infection all cause stress and anxiety, which affect emotional wellness.
Studies have shown that people with CF, as well as parents who take care of children with CF, are more likely to experience anxiety than people in the general population. People with CF and their caregivers who have anxiety are also more likely to experience depression as well.
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