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.
After being told at the age of 14 that I was probably infertile, the day finally came when this news mattered to me. But with IVF and the support of our church, my wife and I are now the proud parents of three biological children.
June 13, 2016
4 Tips for Telling Your CF Story to Legislators
How I Explained My CF to My Boyfriend
“Daddy, will you turn up the TV for us please?” This is a common question at my house. My kids ask me this because the vibrating sounds of my vest and nebulizer always compete with their cartoons. Of course I'm always glad to help and reply with a “Sure!” that sounds more like a “Ssshhh-uuu-rrr-e!” because my whole body is vibrating. As ordinary as this routine may sound, however, it and a million others like it almost never happened.
It is a known fact that most men with cystic fibrosis have fertility issues. I first heard about male infertility due to CF around age 14 during a clinic visit. I didn't fully understand exactly what that meant in those days, but for a young teenage boy the news that I might not be able to have children was like being told that I could never go to the moon. An inability to have kids was just not a concern for me at that point in my life. But there was a day coming when this news would matter to me.
My wife, Misty, and I met in college. From day one of our relationship, she was aware that I have CF. Very early on into our dating, I also told her about my possible fertility issues. I had always been concerned that my possible infertility would be an issue in my relationships, but I was glad to discover that Misty did not see this as an issue at all. We married, and years later she (really, we) wanted to start a family.
We began asking questions at the CF clinic regarding our ability to have children. With each question we asked, I was haunted by my recollection of the clinic visit I had when I was 14. The day had finally come when the thought of not being able to have children was heart-shattering.
In an effort to be sure that we had exhausted all our family planning options, we began to investigate possible next steps. Misty had no known reproductive issues, so I went to see a urologist. We learned that I have a condition called congenital bilateral absence of the vas deferens (CBAVD), which, as I mentioned, is common in males with CF and causes infertility. But this is also where we learned something new and something that was promising: Although I was officially unable to have children through natural means, this condition did not mean that I was sterile. The urologist explained that I had plenty of sperm (what was actually said was that I could populate a small country), but the sperm had no means of getting out. According to the urologist, I needed a simple surgery to retrieve the necessary sperm. Even though a surgery that involved cutting a testicle didn't sound so simple to me, the surgery went well and my recovery was short. This procedure, coupled with our newfound knowledge, paved the way for my wife to undergo In vitro fertilization (IVF).
I was blown away that the impossibility of me having children was now possible. But sadly, our first round of IVF was unsuccessful. We were encouraged by our IVF doctor to try again, and with the generous financial support of a couple from our church we did a second round of IVF four months later. While Misty and I were at a Phase 3 Cayston® study day check-up, we received the call from her nurse -- we had a positive pregnancy test! My firstborn son, Nathan, arrived without incident nine months later, followed by our twins, Charis and Jonas, four years later.
I want to share my journey toward becoming a parent who has CF in the hopes of encouraging others who also have CF who, despite aspiring to one day be parents themselves, may have heard that it isn't possible. I hope that parents of children with CF are also encouraged by my story. We all strive not to let CF prevent us from living life to the fullest, and my life is certainly full as a husband and a father to my three children.
Adult with CF
Born and raised in the pines of Heflin, Ala., David was diagnosed with CF at six months of age. David worked for 15 years in information technology at a regional university in Alabama, but retired a couple years ago to dedicate the time necessary to manage his comprehensive health needs. Today, David is a stay-at-home dad who also homeschools his son, Nathan, and twins, Charis and Jonas. David and his wife Misty enjoy family life on their small farm.
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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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