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.
When my two boys with cystic fibrosis ask me about death, I don't see it as something to be feared or ignored. Rather, I view it as an opportunity to share information about CF and the truths of life in an appropriate and honest way.
November 16, 2016
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“Mommy, am I going to die?”
These six words form a question that no parent is ever really ready to hear or answer. When this question comes from a child with cystic fibrosis or any other potentially life-threatening condition, the conversation that follows can be even more difficult.
As the parent of two boys with CF, I've been asked this question in one form or another many times over the years. I don't think it's unusual for kids to want to know about death and dying. However, for children who know that they are fighting a disease that could potentially end their life, these questions can take on a bit more significance. As their parent, you grapple with how to respond and how much information you should share with them.
Every time that my kids have asked me this question, I responded in a manner that I felt was appropriate for their age and maturity level, while also making sure they knew that yes, they will die; we all will one day. When my kids were around the age of 4 or 5, I kept my answers brief by telling them that everyone is going to die someday.
Unfortunately, we don't know how or when this will happen, so it's important that we do our best to enjoy the time we have together now. This was usually enough to satisfy their need for answers or reassurance.
Inevitably, they eventually began to ask follow-up questions, such as, “How and when am I going to die?” or, “Is CF going to make me die?” For these, my response has always been, “I don't know,” because honestly, I don't. No one does. My kids wouldn't be asking me these questions if they didn't have doubts or suspicions about their health, so I feel that it is extremely important to be honest and forthright with them. The key, however, is to answer their questions without creating more fear or anxiety, while also fostering reassurance -- not always an easy thing to do.
As they got older, I knew that I wanted to be the one to share the information about the median predicted survival age for people with CF. I didn't want them to find it out from a Google search or hear it from someone else. So when they asked, I told them that CF may be the reason why they die, but there are a lot of other things that could be too: car accidents, heart attacks or simply old age. I may have also mentioned getting eaten by a bear as a potential cause of death … (Humor can be important too, especially when you're talking to kids about a weighty topic like mortality.)
I am also quick to point out that even though the median predicted survival age has been increasing over the years, it is not a guarantee, as there are no guarantees in life. I might also remind them that they could get eaten by a bear tomorrow on their way to the bus. It's incredibly important to keep your children's personality and overall attitude about their disease in mind when having these difficult conversations. Humor works in our family, but keeping the conversation more straightforward may work better for yours.
Overall, conversations about death should not be something to be feared or ignored. Death is the inevitable end that all of us will reach at some point. Luckily, we have the privilege of deciding how we want to fill the time before we get there.
In addition to answering my sons' questions about death, dying and CF, I am also continuously reminding them about living. I tell them that they are doing everything they can to stay healthy when they take their medications and do their chest physical therapy. At the same time, I make sure that they are living their lives to the fullest each and every day … even when that means no video games until their homework is complete.
And as my 15-year-old said recently, “Mom, it's life. No one makes it out alive.” So true.
Mother of two children with CF
Jennifer is the mother to her sons JP and Logan, both of whom were born with cystic fibrosis. Jennifer is a graduate of Virginia Tech and works in respiratory sales for GlaxoSmithKline pharmaceutical company. In her spare time, Jennifer serves on the Parent Advisory Board for CF at Children’s National Medical Center, is an active member of the Northern Virginia CF support group, is the team leader for the Miner Miracle Makers Great Strides team and assists with the Centreville, Virginia, Great Strides Walk. Jennifer lives in Chantilly, Virginia, with JP, Logan and her husband Steve.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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