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.
My husband and I had always said that we would either have no kids, or we would have two. But, when our first child was diagnosed with cystic fibrosis, we were suddenly faced with a difficult decision.
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When our son Dean was born in June 2011, it wasn't long until we learned that he had cystic fibrosis. As any parent of a child with CF knows, getting the
diagnosis is one of the hardest days of your life. We were first-time
parents to a
newborn with a chronic disease that we knew nothing about.
The first year was a blur of doctors' appointments, learning about CF and adjusting to life as parents. It was scary and wonderful all at the same time. When Dean turned 1 and was doing well, I breathed a huge sigh of relief. But, at the same time, there was still something my husband Matt and I had always said to each other that was lingering in the back of my mind, and it deeply scared me.
Matt and I had always said that we would either have no children, or we would have two. We didn't have any clear reasons behind this, but in our hearts we always knew that we wanted more than one child, if we had any. So, as Dean grew, we slowly started to discuss the idea of having another child.
When Dean was born, we had NO idea what CF was or that our child was at risk. We did not know that we were
carriers and we were not prepared. We knew that we would be prepared the second time around, if we did have another child with CF, but we also knew about the possibility of CF and the potential risk.
I wondered if it would be fair to bring a child into the world when I had this knowledge going in. Would I be a bad mom if I knowingly decided to have a baby and then that baby had CF? I feared that our child would hate me for it. With these thoughts constantly going through my head, I kept putting off the decision.
Our friends who had kids the same age as Dean were already having their second child. Meanwhile, we were stuck. Before we knew it, two years had gone by and we still couldn't decide what to do.
So, we started talking to other families who had children with CF. We talked to parents who have multiple children with CF and had no idea beforehand. We talked to parents who took precautions with their next child to ensure that they wouldn't have CF. We also talked to parents who “rolled the dice.” My husband and I talked to each other, doctors and family. We thought, we talked and we waited some more.
Then, in the summer of 2014, we decided that we would go for it. We agreed that we knew what
life with CF was like and that we were prepared if we had another child with CF. We also knew that
research is changing every day and people with CF are living longer, healthier lives than ever before. But still, I struggled and I worried. I actually started looking at adoption agencies the week I found out I was pregnant!
We didn't do any testing during the pregnancy to see if baby number two had CF, although we did do an extra ultrasound to check for any bowel obstructions -- just to be prepared. When our daughter Renley was born in April 2015, we were on pins and needles for the first week waiting on the results of her
newborn screening. When she didn't want to breastfeed in the hospital, I went straight to formula. After all, I didn't know if she had CF and -- if she did -- she needed to eat! The days went by and -- although we weren't seeing CF symptoms like we did with Dean -- we didn't want to get our hopes up. When we finally got her newborn screen back, it was negative -- for everything. She wasn't even a carrier.
I cried. I could not believe it.
Now, as I watch Dean and Renley play together 20 months later, I cannot imagine not having her in our lives. She adores her big brother and follows him around everywhere. She sits with him while he does his
treatments, and Dean would do anything in the world for his little sister.
I am thankful every day that Renley does not have CF, but I also know that we would have been okay if she did. It was a tough decision to make, and it took us longer than we had planned. But now that we have Renley, our family of four is complete.
Mother of a child with CF
Rachael is the mother of her daughter, Renley, and her son, Dean, who was born with cystic fibrosis. A graduate of Indiana University and University of Indianapolis, she now works for AdvancED - Measured Progress, a non-profit education organization where
she provides support and professional learning to school and system leaders. Rachael and her husband, Matt, are very involved with the Indiana chapter of the CF Foundation. Matt is a member of the Indiana chapter's board, while Rachael volunteers
at events and has been the chair of Indiana's Cycle for Life since the first ride in 2013. Rachael is also a member of the Foundation's Community Voice Editorial Board, Research Voice, and participates in a variety of advocacy efforts. Rachael and
her family live in Indianapolis. You can contact her at firstname.lastname@example.org or @RachaelHavey on
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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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