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.
Learning more about the financial, health, lifestyle, time-management, and other implications of being a parent with cystic fibrosis can help you decide if having kids is right for you.
Thanks to advancements in cystic fibrosis care and research, more adults with CF are considering starting families. Although parenting is not for everyone, it is important to understand that having kids is a very real possibility for people with CF if it is something they wish to pursue. The decision whether to have kids is a highly individualized one, and largely depends on your own situation and goals.
For some, having a child that is genetically theirs is important, whereas others may focus on alternate family building options or aspects of life beyond having kids.
"Right after our wedding, the questions started. 'When are you having kids?' people asked. 'How many kids do you want?' … But here is my question to them: 'Why do I have to have kids?' The answer is that I don't, and neither do you if you choose not to." -- Dana Curry, adult with CF
Although there are certain factors that any future parent must consider, these factors are often more complicated when you have CF. For this reason, discussing key family planning considerations with your partner, spouse, family, friends, or CF care team is an important first step toward deciding whether having children is right for you.
In addition to standard questions that any prospective parents should ask themselves, there are some family planning considerations specific to CF, such as:
All people need to weigh their realities to achieve their life goals, whether it be a career, marriage, living abroad, or having kids. Your reality to weigh may be your CF, and it may be other factors as well; all you can do is be honest with yourself and start planning by addressing the important implications ahead of time.
Consult with your care team, listen to your body, assess your priorities, and be thoughtful when deciding what tradeoffs you are willing to make based on the quality of life you want and your personal goals.
Watch the video below to hear an adult with CF and Mike Boyle, M.D., FCCP, discuss:
If you decide that you would like to start a family, you will need to gather information and assess your health to identify what your family planning options are.
If you are a woman with CF, are you planning to have a child through pregnancy? If so, it is important to understand that women with CF with good lung function and nutrition are in the best position to become pregnant and have a healthy baby.
If you or your care team are unsure about your ability to carry out a healthy pregnancy, then you may consider other family building options. Although alternatives including adoption, IVF, and surrogacy may help maintain your health, they may also come with important tradeoffs.
Hear parents with CF and Mike Boyle, M.D., FCCP, discuss:
The decision about how to build your family is often as individualized as the decision to have children itself. Every experience is different, so gathering the necessary information, assessing each option in relation to your individual needs, and having open discussions with your CF care team, partner, family, and friends are key.
For men with CF, having biological children is possible, but will often require assisted reproductive technology (ART). Because 97-98 percent of men with CF are infertile, most will require a procedure in which a urologist makes a small incision in the scrotum to extract the otherwise absent sperm. The extracted sperm can then be used to fertilize an egg through IVF.
Although the process of becoming a father may not directly impact your health in the same way that pregnancy does for women with CF, there are still important factors that a man with CF should consider before starting the journey toward fatherhood.
Many ART procedures, adoption, and surrogacy can be expensive and will generally not be covered by your health insurance. However, you should contact your insurance provider first to make sure that you know exactly what will be covered and what you will be financially responsible for.
You will also need to think through the genetic implications of having a child as a man with CF based on the results of your partner's carrier testing, as well as the larger family planning questions and considerations.
The quality of your health can affect how much time and energy you will be able to devote to parenting activities. As some parents with CF have noted, illness has both an emotional and a physical component that is important to consider.
"When I'm not feeling well, pushing myself to take my kids to an event at school anyway can actually set me back further -- not only in terms of my health, but as a parent. When you're not taking care of yourself, it's easier to become grumpy or short. That's why it's so important to ask for help and rely on my family or community to step in and take my kids to that event so I can take the time I need.” -- Anna McVey-Tyson, adult with CF
Discussing your family planning goals with your CF care team, prioritizing your own health, and making sure you have a strong support system that can help out during times of need are all important first steps toward deciding if having a child is right for you.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails