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.
My experience surviving a life-threatening infection led to my role as the CF community co-chair of the Cystic Fibrosis Foundation's Infection Research Initiative. Having a room full of leading scientists listen to my story helped renew my faith that we can tackle the complex challenge of difficult-to-treat infections.
October 28, 2019
I Have Two Nonsense Mutations Heres What a Path to a Cure Means to Me
Living the Island Life With CF
Diagnosed in infancy, I'm no stranger to infections and hospitalizations, but somehow I always remained hopeful that medical science's ability to treat infections would outpace them.
This changed about three years ago.
A relentless, resistant infection started taking over my lungs. Perhaps the worst part was that with each telltale physical symptom came another even more difficult emotional pill to swallow (intentional pill pun). My new normal meant repeated hospitalizations that took me away from family, my career, and friends. I felt like the joy we had felt just last year about the approval of tezacaftor/ivacaftor (Symdeko®), a CFTR modulator therapy, was overshadowed by the inadequacy of available antibiotics to treat my current symptoms.
As I was starting to lose hope, my CF care team found research that showed successful treatment of an infection like mine by using a nebulized medication that I was allergic to in other forms. Despite the lab tests' prediction that this type of treatment wouldn't work, we tried it, and it was the first treatment in well over a year that kept me off IV medications and gave me back my life as I wanted it.
More importantly, the treatment restored my hope. Hope that allowed me to welcome a second son into the world! It was after I'd just fed and snuggled my newborn that I saw the application from Community Voice to become a CF community member co-chair for the Cystic Fibrosis Foundation's Infection Research Initiative Steering Committee in my inbox.
I told my husband, “I have to do this. It is why I have this life right now.”
At the first steering committee meeting, I offered my story, along with what I saw in the CF community's sense of urgency, for better ways to treat infections. My words, along with the stories shared by other community members in the meeting, were met with compassion, curiosity, and surprisingly, even a little bit of “let's go” confidence (as my 8 year old would call it). This is not what I expected, since the majority of the meeting reflected the reality that the science of infections is incredibly complex and overwhelming.
During our lunch break, one of the doctors on the committee asked us about this complexity and how we thought the initiative might make the community feel. Would we feel frustrated that many questions about infections were not yet answered? Would it bring hope? In that moment, I felt a rush of hope for myself and my community. If a room full of the field's leading scientists and -- perhaps -- the world's most well-known venture philanthropist organization were ready to solve these big problems, then I have faith that they will be solved. My wish is for everyone dealing with difficult-to-treat infections, whether a new culture, or a decades-long battle, can feel this hope and reprieve from the worry of “no more treatment options.”
I realize that the reality of CF is that an infection may one day outpace my ability to manage it. But, the commitment of the Foundation, scientists, and our community keep me hopeful that we can figure out ways to keep up with infections and maybe even experience a few big life wins along the way. So let's go!
Note: If you want to get involved in the next wave of applicants for the steering committee or take part in other initiatives at the Foundation, join Community Voice to get notified of these and other opportunities.
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Adult with CF
Mary-Leigh was diagnosed with CF at 6 months old and CF-related diabetes at age 19. She lives in Northern Virginia with her two energetic children, loving husband, and exuberant goldendoodle. Shifting gears from her more than 12 years of management consulting and a graduate degree in economics, Mary-Leigh is working on her doctorate in education. Follow Mary-Leigh @65races on Twitter.
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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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