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.
The hope that came with the authorization of two COVID-19 vaccines has been coupled with anxiety and frustration as I wait.
Piper Beatty Welsh, J.D., M.P.A.
February 4, 2021
What I Wish I Knew When I Was Pregnant With CF
Opening Up About My CF
Let's face it: living with cystic fibrosis is never easy, and living with CF in the middle of a pandemic is harder still. As an adult with CF, a grateful recipient of two double-lung transplants,
and a recent survivor of cancer to boot, the past 11 months have been a whirlwind of emotions for me, as I'm sure is also the case for others in our community. I have been worried about the effects of COVID-19 on people with CF and on our wonderful care teams and hospital workers, amazed at the innovation in fields like telehealth that have allowed us to continue to receive the specialized care we need,
and impressed by the incredible resilience and strength of our community.
I have also been, at times, extremely frustrated about the unique challenges faced by people with CF and other serious medical conditions in the COVID world. And with the recent (and so encouraging!) authorization of highly effective vaccines against
the virus, I feel the conflict between frustration and hope perhaps more than ever. There's a light at the end of the tunnel at last, and yet the tunnel, from where I stand, still feels way too long. I worry about my ability to stay safe while I wait
for “my shot” at protection from COVID-19.
This issue is a tough one to address in a single blog, because COVID-19 vaccination protocols look
different depending on where you live. In my home state of Colorado, for example, people younger than 65 with one serious preexisting condition that significantly increases the risk of severe complications from the virus are all placed together in
Phase 2 of the vaccine prioritization plan. Unfortunately, this phase doesn't include people living with CF. There are currently five groups of people ahead of people with CF, ranging from frontline health care workers and the elderly, to people who
work in industries considered essential or who have contact with the general public.
The number of people who need to be vaccinated, and the decisions about who gets priority mean we don't know when we are likely to receive the vaccine that may help save our lives.
I don't want to minimize the fact that this is a hard issue with no easy answers. Vaccine demand in many parts of the country simply exceeds the supply, which means prioritization plans need to be in place to ensure that those most vulnerable to severe
outcomes from COVID-19 infection get access. That makes sense to me, and I have huge respect for the policymakers struggling to make this process as fair as possible. That said, I can't help but feel a little left out and, quite frankly, worried.
My multiple diagnoses include chronic immunosuppression from my lung transplants and cancer, in addition to ongoing challenges due to CF.
Like most of us, I have been as vigilant as possible ever since the COVID-19 crisis began because I knew it was up to me to protect my health and my lungs in any way I could. I'm lucky to have a supportive network of family and friends who have helped
me combat isolation and make it to this point with my sanity (mostly) intact. But my need for in-person medical care is getting more and more urgent; my lungs need imaging and my oncologist wants to do additional scans as well. I can no longer rely
exclusively on telehealth, and that means that the chances are higher that I will be exposed to this virus -- not because I'm going to parties, but because I have to be in large, public settings to access care.
My hospital and care teams are doing all they can to keep me safe, and I'm grateful. However, my suppressed immune system means I'm at higher risk than most for severe disease.
I wish more people understood that for people like me and many others with CF, this vaccine doesn't represent a “return to normal” so much as a chance to access crucial medical care without that added layer of worry and concern.
Even though I can't necessarily get a vaccine tomorrow, there are still things I can do to feel empowered about my health and to make my frustrations heard. And so, I have challenged myself to continue speaking up about this subject, so that more people
understand. I've been reminding myself that it's okay to be frustrated. Being vocal about why people like me should have access as part of a high-priority group doesn't make me selfish or uncaring. I've been as honest as I can with others about the
challenges of living through this pandemic with CF and other medical conditions.
I've stopped accepting comments like, “you've come this far so these last couple months should be easy” and started to give myself space to admit that this is hard -- really hard.
I've also reached out to my doctors to discuss my concerns about things like in-person visits, and we've been able to make a plan together that will keep me as safe as possible given the situation.
If 39 years (and counting!) with CF has taught me anything, it's that I can't go this alone. By speaking out about my personal experiences and needs -- including the hard stuff -- I am finding the support I need, and, I hope, helping to grow public awareness
of why this vaccine matters so much to our community.
Piper Beatty Welsh, J.D., M.P.A.
National Strategic Collaborations Liaison
Piper was first diagnosed with CF at 6 weeks old in 1981, and has since been the survivor of two double-lung transplants. Piper attended Emory University, received her J.D. from Columbia University Law School and then went on to earn her master's in public administration from New York University's Wagner School of Public Service. She is the owner and author of the popular CF and transplant blog, A Matter of Life and Breath, and lives in Colo. with her husband and puppy.
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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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