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.
At the age of 30, I faced the difficult reality of a conclusive cystic fibrosis diagnosis and the CF-related infertility that came with it. Although I experienced a lot of guilt as my wife and I built our family and I hated seeing her suffer because of my disease, our journey with in-vitro fertilization (IVF) proves that you can be a father despite living with CF.
October 2, 2018
Paying More Attention to Infection Risk Now That I’m a Father
Finding My CF Mom Tribe
In 2015, things were going pretty well. I had just turned 30, been promoted at work, moved from Kansas City, Mo., to Chicago, and celebrated five years of marriage with my amazing wife. We felt the time was right to start a family.
After a few failed attempts to get pregnant the natural way, I decided to go to a urologist, who looked at my medical history and pushed for additional testing. Within weeks, I was not only given a conclusive CF diagnosis, but my wife and I learned that nearly 98 percent of men with cystic fibrosis are infertile.
Like many other men with CF, I was born with congenital bilateral absence of the vas deferens (CBAVD), which prevents the semen from making it into the sperm and causes infertility. However, advancements in fertility treatments have made it possible for men with CF to have biological children through in-vitro fertilization (IVF). My wife and I accepted this news in stride, and although we didn't know much about becoming a parent with CF or going through IVF, we did our best to prepare for all the unknown obstacles ahead.
As we gathered more information, we soon learned our health insurance did not cover fertility treatments and that we would have to pay for the IVF procedure out of pocket. While costs can vary, one round of IVF came out to be about $17,000 in our case. The cost was daunting, but it was a chance we were willing to take.
Our next step was to meet with our doctor to discuss what going through IVF would mean for us. My wife was 28 at the time and in excellent health. Despite this, there was only about a 50 percent chance of success, with the caveat that the chance of success could be even lower in our case because of my CF mutations.
When our doctor explained the physical and emotional toll the process would take on my wife, I looked over expecting to see the same look of worry and fear on her face that I had on mine. But instead, I saw her remarkable strength. She did not break eye contact with the doctor, fully engaged and listening carefully as she tried to absorb every ounce of information.
In that moment, a wave of guilt came over me that I still carry with me today. I knew that I would not let this break her and that I would be her strength if she felt weak. But somehow, that didn't seem like enough. I wanted to lift this burden off her shoulders entirely.
During our first round of IVF, I stood by as my wife endured the physical and emotional strains associated with the months-long process. When we learned that our first try was unsuccessful, I watched my wife's strength fade and I felt helpless, wishing there was more I could do. The immense guilt I experienced multiplied each day, feeling that it was my fault she had to go through this. I was fine having to deal with my CF, but seeing it impact her life was hard. We did our best to stay positive, but when our second round of IVF also failed, our initial determination was replaced with total devastation.
We decided to take a break and reset after an intense few months. After talking things over, we decided to give IVF one more try and agreed that we would pursue other options for starting a family if the third attempt didn't work. People often say the third time's the charm, and in this case, it definitely was. The trials and tribulations were not easy, but unquestionably worth it. Being parents to our twins, Liam and London, has been a blessing that we never take for granted.
One of the most difficult things about this process was the lack of support. We did not know anyone else with CF who had started a family, and we felt very alone during the process. Although we had each other, knowing that someone else understood how we felt or hearing a success story from another person with CF dealing with IVF would have been a huge inspiration during those incredibly trying times.
Having learned more from our experience, I would recommend reaching out to your local chapter to see if there is anyone going through something similar or to join CF Peer Connect. I would advise you to work with your CF care team to learn about any potential resources available. Our fertility center was also key resource for us, especially when it came to finding programs that could help with the cost.
For any other men with CF planning to start a family, the process will be grueling, and you may feel guilty. IVF and becoming a parent evoked so many new feelings for me regarding my disease. The guilt I mentioned was replaced by joy when we learned we were expecting twins. But, that joy was quickly replaced by feelings of worry and a general fear about CF that was completely new for me. The “what-ifs” kicked in and the severity of what I was up against flooded over me. I realized I needed to live and be there for my children and my wife. I had spent a lot of time distancing myself from the disease, and I could no longer afford to do so. I don't want my time as a father to be limited and I work hard to keep as much time on the clock as possible.
Even though it is hard to think of yourself as you build a family, you must make your health a priority and take care of yourself -- even during the stressful times. I hope that our story can encourage someone else who is considering starting a family or who is currently going through this to not give up by showing that it is possible … you can become a father despite living with cystic fibrosis.
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Adult with CF
Austin is an adult living with cystic fibrosis. Born and raised in Kansas City, Mo., Austin earned a Bachelor of Science degree in public relations in 2008 from the University of Central Missouri. Austin now resides in Phoenix and works as a leader within the claims operation of a major insurance carrier. He and his wife, Diane, are the proud parents of twins, London and Liam.
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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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