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 parents of kids with CF, we can make a life-transforming difference by focusing as much on their mental health as we do on their physical health. If you think your child's CF is taking an emotional toll, asking yourself these questions may help.
Lisa C. Greene, M.A., CFLE
September 29, 2015
You Did It! EACT Passed in The House
Not too long ago I had a conversation with an amazing dad who is concerned about his 15-year-old daughter. She has cystic fibrosis and it's taking a toll on her emotionally. She's been hospitalized a lot and is not doing well at school. He is afraid that she is giving up, and he needed ideas for how to turn it around.
Certainly there are no easy answers here, but if you are the parent of a teen with CF and can relate to this dad's experience, here are some questions that may help.
1. First, is your child depressed? Working closely with your child's care team, you may consider taking your child to a professional who is experienced with working with people who have chronic illnesses. They can identify whether or not your teen is clinically depressed or if she is “simply” disheartened. People with chronic illnesses, such as CF, have a higher rate of depression and anxiety. Getting professional help early is the first line of defense.
2. What brings your child joy? Without having something to look forward to in life, people get tired of living. Sometimes it takes a little effort to figure out what brings your child joy.
I worked with one mom whose 14-year-old son with CF was struggling emotionally. She knew that he loved animals, so this mom made arrangements at the local zoo for her son to volunteer periodically. This really helped give him something to look forward to and work toward as a possible career down the road. It gave him just enough hope and joy to get through some rough spots.
3. Are you purposeful about having fun and connecting as a family? With our own two kids who have CF, we have always made it a priority to have fun as a family. It's not always easy; we have to drag around a lot of medical equipment everywhere we go. But it's a priority for us, so we do what it takes.
After medical clinic visits when our kids were little, we'd go to the zoo, a children's museum, a park or out to somewhere fun for lunch. We still go out after clinic when we can. When our daughter was hospitalized for several days, we “busted” her out of the hospital (with permission) to see the premiere of “The Hunger Games” with her friends.
Everyday life affords many opportunities to make memories. Studies have shown that investing more time, energy and money in life experiences, i.e., "having fun," makes you happier than buying "stuff." I believe this approach has been a big part of our kids having a good attitude about cystic fibrosis, enjoying their lives and being connected as a family.
Family traditions, time together, fun experiences … these are the things that lend a sense of hope and meaning, especially during the hard times.
4. Does your teen have a vision for his or her life? Sometimes when kids have a serious and progressive chronic illness like CF, they have a hard time seeing past the illness to a future. It's important that we encourage and empower our children to dream and plan. With many illnesses, including CF, there is so much hope for the future!
5. Can you connect your child with a good role model? Sometimes when a parent tries to encourage their teen directly, the child dismisses what their parent has to say with, “You don't understand. You're not the one with CF.” In these situations, it can really help to share positive, powerful role models who are as much like the child as possible.
And by the way parents, what brings you joy? Are you taking good care of yourself, making sure you get your batteries recharged and having fun every now and then? Do you have a sense of purpose and meaning for your life (outside of living for your children)? Your positive example speaks more than words and lectures.
Lisa C. Greene, M.A., CFLE
Mother of two teens with CF
As a national public speaker, Lisa speaks to parents and medical professionals about parenting, medical adherence, transition, and resilience. She is also the author of three books on parenting children with health issues. Lisa is a certified family life educator and parent coach. She holds a master's degree in family life education and teaches college classes at Concordia University in the Department of Child and Family Education. Lisa's mission is to help families learn practical, easy-to-use tools to deal with the everyday challenges of living with CF. You can find more articles by Lisa at www.TipsForCFparents.com.
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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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