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.
As the parents of two children with cystic fibrosis, we survived every parent's nightmare -- the loss of a child. Alyssa, our 29-year-old daughter, died in March 2018 after two failed double-lung transplants. We don't question why, because there is no acceptable answer. We just soldier on and fight for our son.
Frank and Sue LaRosa
July 16, 2019
Works by the CF Community
When Anxiety Attacks
For us, there were two times in our lives that were unequivocally the worst: the day Alyssa was born with cystic fibrosis, and the day we lost her.
Actually, there was another day that was just as bad and that was when we had a second child with cystic fibrosis, Tré.
We challenge anybody who has children to find something more important than the quality of life for their kids. We bring children into this world and want only the best quality of life for them. Unfortunately, when your child is born with a chronic, progressive, and ultimately incurable disease that has a reduced lifespan, it changes your whole perspective on quality of life. From birth, your child is in for the fight of his/her life. Every single second of every single day is a fight.
There are small wins but way more losses -- with the largest loss of life coming way too soon. We don't question why because there is no reason to, and there is no acceptable answer. We just bear down and go to work.
The pain of your children knowing their mortality and having to think about it every day is absolute torture. Knowing your children may not experience the wonders of life like getting a job, living on their own, getting married, having children, and simply enjoying life is a dreaded feeling. This is the part that we question: Why should a child have to think about this? That's the part that's unfair. As parents, we would do anything to take this away. Watching your daughter and son fight to have the things in life you enjoyed growing up is completely backwards.
Think about your daughter having to be scared to die, wondering what she's thinking when she hears there are no other options to save her life. Imagine hearing your daughter say that she's going to miss upcoming family events and cry while she's saying it. That was our reality. We watched her struggle to breathe and endure the pain. We listened in anguish when she said she just didn't want to hurt anymore; then when she said she just wanted to go to sleep; and then when she said she had had enough.
This experience alone was heart wrenching, but then we had to think about how our son, who has the same disease, felt watching his sister pass away. We worried about how he would deal with it. Our son continues the fight. He wonders what his life is going to be like. He grieves the loss of his sister, while dealing with his own challenges. He wants to move forward, get married, have children, and be a responsible parent. Yet, he has no idea what CF is going to do to him in the long run. We listen to him as he compares himself to his sister, where he's at in life and where she was at the same point. We listen to him as he tries to plot out his future.
What the hell kind of quality of life is this? It sucks, and it is by no means what you want for your kids. But to us, it is our lives, and we have had to deal with it.
We decided, be it intentional or instinctual, that we would do everything in our power to give our kids the best quality of life we could.
We did not question, fight, or complain about our lives or our kids. We focused on the now, and we didn't think about the future because it served no purpose.
As situations worsened, yes, we hated it, but we just handled it when it happened. This is how we stayed sane and somewhat positive. We raised our children the best way we knew how, which is to be responsible, caring, and productive people. We led the fight as fundraisers and as attentive parents and supported them as they took over their treatments.
We never gave up and will never give up. That's what responsible, loving parents do.
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Frank and Sue LaRosa
Parents of children with CF
Frank and Sue have been married for 35 years and live in northern Kentucky. Their daughter, Alyssa LaRosa, passed away at 29.5 years in March 2018 from cystic fibrosis. Their 25-year-old son, Francis “Tré” LaRosa III, also has CF. Frank lost a 6-year-old cousin to CF in 1966 and later his 12-year-old sister to CF in 1978. Frank and Sue are avid fundraisers for CF research.
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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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