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 a frequent public speaker, I was surprisingly nervous the day before I spoke to my kids' classmates about the realities of cystic fibrosis several years ago. Luckily, my kids knew just what to say to calm my nerves.
Lisa C. Greene, M.A., CFLE
August 22, 2017
Balancing Life as a Single Parent to a Child With CF
How a Lung Transplant Refocused Me on What Really Counts
I have to admit I was a little worried about how the talk at school would go. Even though I am well-trained in communicating with kids, I am a mom, first, and, moms worry! It's part of our DNA.
The kids had just started a new school, and the teachers requested that I talk to their classmates about their medical issues. Both of our children have cystic fibrosis. They need to take medication (pancreatic enzymes) to help them digest their food properly. Of course their classmates have noticed Jacob and Kasey chucking down a handful of pills at lunchtime and have barraged my children -- and their teachers -- with questions.
I spent a couple of hours preparing for the talk. I wanted it to be fun and informative -- sort of like a health education class. Kids need visuals, so I found a diagram of the digestive system that could be colored. Jacob and Kasey helped me gather some show-and-tell items: a nebulizer cup, an albuterol puffer, and a few opened-up pancreatic enzyme capsules placed in a baggie (kids always want to know what's inside). We also made a plate of brownies and grapes to share and to help explain how kids with CF have different nutritional needs than most people.
Jacob, Kasey, and I decided together what to talk about, and I gave them lots of choices: Do you want to talk or have me do it? Will you be with me or at your desk? Kasey (in first grade) decided to have me do all the talking, but she would be my helper. Jacob (third grade) decided to talk about pancreatic enzymes and have me teach about the rest. We were prepared, and the kids' classmates were excited. Kasey's little girlfriends were buzzing with anticipation. They were all so curious about CF.
I was nervous. I do plenty of public speaking, but I was more nervous about speaking in front of 20 first and third graders than 200 adults. These are my babies, and this is “life-and-death” stuff in front of their classmates. What if I blew it?
One of my biggest fears was that a child would innocently ask, “Will Jacob (or Kasey) die from cystic fibrosis?” The honest “grown-up” answer is, “It's possible unless there is a cure.” But, that's not something a class full of 7- and 9-year-olds need to know. I wasn't exactly sure how I would answer this question, and I wasn't sure if my kids really understood this reality even though we had discussed it years earlier. So, taking my cues from the well-known psychiatrist Dr. Foster Cline, I decided to ask them.
Preparing for the worst, I casually (but with heart pounding) asked my son, “So, Jacob. What would you say if someone at school asks you if you can die from CF?” He thought for a moment. Then he said, “Well, I would say people do die from CF. But we are more likely to live longer when we take good care of our bodies.”
Wow! The answer of my dreams! He knows the reality of the situation but also understands the role he plays in taking responsibility for his health care. Plus, he understands the long-term impact of his health care decisions. I was massively encouraged.
Later on, I asked Kasey the same thing. She said, “Well, you can, but if you eat healthy and take all your medicine then maybe not.” Bingo! Two for two. Both kids have an understanding of the reality of CF and are hopeful about positive outcomes based on their choices about self-care. I have to say I was a little surprised. I didn't think that children this young could have such a mature attitude and understanding of such a heavy situation.
The talks went well that day. All of the children were curious, open, and delightful. We had a lot of fun together, and they loved eating the brownies and grapes. Kasey even demonstrated how she could chuck down four enzymes in one swallow. The kids couldn't have been more amazed if it were a flaming sword.
And no one even asked the dreaded question. Go figure.
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. 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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