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.
Shortly after my fiancée, Ashley, told me about her cystic fibrosis, we were engaged. Months later, she passed away, leaving me to figure out what I could have done differently and how to cope.
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Although Ashley and I met in June of 2015, it wasn't until we told each other “I love you” and began talking about moving in together that I learned she had cystic fibrosis. I had suspected she had some health condition long before, but I never suspected Ashley had CF because I didn't know what it was. After she told me, I knew that our relationship would change, although my feelings for her didn't. What changed was that I became the partner of someone with CF.
A few months later, we got engaged, looked at forever homes, and talked about
trying to have a baby someday. I began to educate myself about CF and Ashley began to open up to me about it. She realized that we were a team and I would be by her side for every second of the fight, no matter what.
Sometimes I would become frustrated when she said she didn't want to do more at the gym. What I came to realize later -- after she passed -- was that it's not that she didn't want to do more, it's that she couldn't. But she couldn't convey what it's like to have CF. It's something only a person with CF can really know.
Just when I thought I was starting to finally wrap my head around all this CF stuff, Ashley got really sick and was hospitalized with an infection. We thought we had turned a corner, but unfortunately, the infection wouldn't let go. After a month-long fight in the intensive care unit (ICU), Ashley passed away three weeks shy of her 30th birthday. It felt like we went from lying on the couch watching TV together to her funeral in the blink of an eye.
Looking back, the signs of a decline were there. She was getting more infections, losing weight, and having a harder time doing the things she was accustomed to. During the last month of her life especially, her struggle had become a topic of daily conversation. I can see these signs in hindsight -- and could see some of them at the time -- but in the moment, I always thought she was okay and we'd get through it. I don't think she truly knew how sick she was until the last few weeks.
It's because of how healthy she seemed to be that I took my cues on how she was doing from her. She said she was okay and I accepted that. I still did not know enough about CF, or living with someone with CF, to know or deal with it any better than I did. Perhaps I was also a bit afraid of knowing the answers to certain questions. I wish I had asked some of these things sooner. She was forthcoming with me, but I think she had always felt like CF was her problem and wanted to deal with it herself, which meant refusing to let it govern her life or her relationships. That's the type of person she was.
Ashley was an amazing woman. She lived her life on her terms, and not CF's. She accomplished a great deal in her short time here with us, and brought joy and happiness to so many. I wish we would have had the future we planned, but I'm grateful for the time we had, and I'm a better person for having known her.
I don't know if asking these tougher questions sooner would have changed the outcome, but it's something I still struggle with. Thinking about what I should have asked and when, what I should have or could have done differently, or what if I would have known sooner, is not going to change anything now, however. I've learned to forgive and be kind to myself; I did as much as I could with what I knew. I simply ran out of time.
That month in the ICU was the most difficult time of my life. The months since have not been much easier. Thankfully, my friends and family, including Ashley's family, have been a great support. I also began seeing a counselor, and have joined -- and actively engaged with -- numerous online groups geared toward CF and spousal loss in general, all of which have been extremely helpful during the grieving process. Unfortunately, there is not a lot out there in terms of support for spouses of those with CF specifically, but I hope
organizations like Project CF Spouse will change that. It's a nonprofit that works to educate and support spouses of people with CF. I don't know if Project CF Spouse would have prepared me for all I went through with Ashley, but it's clear to me that CF spouses are in a unique situation, and we can benefit from the wisdom and experience of others like us.
Widower of a woman who had CF
Jesse was engaged to a beautiful woman, Ashley Briggs, who passed away in early 2017 due to complications from cystic fibrosis. He lives in Plymouth, Massachusetts. Jesse earned a bachelor of science degree in business administration at Bryant University in Rhode Island, and a master of business administration degree at the University of Massachusetts Boston, majoring in marketing. You can learn more about the foundation her family has created in memory of Ashley, the Breathe for Bea Foundation, which is focused on helping other families like theirs fight Cystic Fibrosis, by visiting the Breathe for Bea website.
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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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