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.
Planning Ahead and What to Expect
Being a parent with cystic fibrosis can be difficult, but a strong support system can help. By learning more about what to expect as a parent with CF, you can find new ways to balance your own health with the time it takes to care for your child.
As a parent with cystic fibrosis, you will likely have questions related to taking care of your child as you also strive to take care of yourself. On the one hand, having a child will likely increase your motivation to stay healthy in order to be there as long as possible and keep up with the physical demands of parenthood.
At the same time, it can also mean that you have less time to maintain your health and complete your daily CF treatment routine. Parents with CF are, therefore, faced with the unique challenge of finding ways to fit in a time-consuming treatment plan while also providing for their child's needs.
As a new parent, you will face the same challenges as any other parent when it comes to caring for an infant, including stress, questions about breastfeeding, sleepless nights, and adjusting to a new routine.
When you have CF, however, you are not necessarily able to temporarily put your own needs on hold and focus solely on the health of your newborn baby.
At this stage of your child's development, you will likely be facing the significant challenge of balancing the time it takes to care for yourself with the time it takes to care for a baby. For this reason, it is important that you are able to rely on your partner, spouse, family, community, or another form of support to take over some of the childcare duties so that you can devote the time you need to your daily CF care.
"My doctor told me that in order to be a good mom, you have to put yourself first. My wife has made that possible. When I'm resting, she knows she's on duty. I can't imagine not having a family support system. It takes a village." -- Sarah Foose, adult with CF
If you find yourself getting too busy or forgetting treatments, it is important that you talk to your CF care team. It can be easy for new parents to put their children before themselves, but having an open discussion with your care team can help you arrive at tips and strategies for finding a treatment plan that works for you.
Watch the video below to hear Jenny Stump, a mother with CF, discuss:
As some parents with CF have noted, being the parent of a toddler comes with a unique set of challenges. This is the time when your child is developing new language and motor skills, which often means that they are highly active.
“There are so many physical demands as a mom -- especially when your kid is a toddler. If I hadn't worked to optimize my health, I don't know how I would keep up.” -- Sara Dunn, adult with CF
Keeping up with a toddler can sometimes cause shortness of breath, fatigue, and other complications related to doing higher-than-normal levels of activity as a person with CF. Parenting a toddler can require a great deal of physical energy, so it is important to talk to your CF care team if you are struggling to keep up with your child because of your health. By partnering with your care team, you can discuss possible strategies or adjust your treatment plan to help meet your changing needs.
As the parent of a school-aged child, you will face several unique challenges related to your cystic fibrosis. One of these is the issue of germs. Parents know their children can pick up germs while they are at school. When you have CF, it can be difficult to balance the everyday responsibilities of parenting while also avoiding colds and common illnesses.
“When my kid is sick with something he picked up at school, it's hard because I know the best thing for me is to keep my distance. Yet, your first instinct as a mother is to care for your child, so it's difficult when I'm unable to stay by his side during his times of need. My husband takes on a much bigger role during these times, and will be the one to take off work, bring him food or medicines, and handle anything else my son may need. It can be an emotional experience and I could not get through it without the support of my husband.” -- Adult with CF
Explaining common infection prevention and control practices to your child in an age-appropriate way can help you establish rules and boundaries for staying healthy. By helping your child understand how germs spread and the importance of avoiding them when you have CF, you can ultimately help reduce your risk of getting sick in your everyday life.
“I almost didn't even tell my child's pediatrician about my CF, but it came up. He was extremely helpful and asked what he could do to accommodate me ... including keeping me away from his other pediatric CF patients, allowing me to come through the back door, or go right to an exam room to avoid the germ-filled waiting room. I would not have thought to ask for any accommodations from my child's pediatrician, so I'm glad I had that experience.” -- Kristin Dunn, adult with CF
In addition, your child's teacher, guidance counselor, and school nurse will all be important allies in helping to assess how your child is dealing with your illness. For this reason, it is important to reach out and maintain good communication with the staff at your child's school.
You, your child, your significant other, or other family members may need help coping with the added stress of parenting and all it entails. Your care team can help you and even connect you to other parents with cystic fibrosis. Do not be afraid to admit that parenting is causing you and others stress.
There will be times when you will need to be hospitalized or experience an exacerbation, and you may worry about how this will impact your child. For example, you may feel as though he or she will experience trauma from seeing you ill so frequently or negatively react to the unexpected separation. Working with your CF care team, reassuring your child that you will only be gone for a short time, and encouraging family members to play a larger role during the times when you are sick or away are all strategies for helping your child feel more at ease.
Many parents with CF have found that being honest with their child and answering any questions about what is happening to them is an effective strategy. By including their child in discussions about CF, some parents feel that they are able to help their child cope and create a family bond. Your CF care team may be able to give you some ideas of what to say during these discussions or help you practice beforehand. No matter what you decide, it is important to share an appropriate amount of information for their age and stage of development.
“My 3-year-old daughter knows I have lungs that are not strong and that I'm waiting for lungs that are strong. When I was listed, we told her that everyone has weaknesses they need to work on and my weakness is my lungs.” -- Sarah Foose, adult with CF
Sometimes, the conversations with your child may be more difficult. For example, if you are waiting for a lung transplant or starting palliative care, you may need to prepare your child for when you are no longer around. Although preparing for something like this hardly comes naturally, your CF social worker may be able to direct you to resources that can help.
Watch the video below to hear parents with CF and Mike Boyle, M.D., FCCP, discuss:
Being a parent with cystic fibrosis is a hard balancing act that requires you to make difficult choices. For example, when it comes down to either doing your
treatments or spending time with your child, it can be easy to neglect your own health and de-prioritize your needs.
It is important to develop a daily routine that enables you to do your treatments so that you can maintain your health. Work closely with
your CF care team to develop a treatment schedule that works for you, and rely on your partner, friends, or other family members to babysit when you need some time to focus on yourself. Being a parent with CF can be difficult, but
having a strong support system can help make it a bit easier.
Listen to parents with CF offer their own tips and strategies for:
When it comes to balancing your health as a parent with CF, it is important that you do not take on all of your daily care yourself. This means being open about your CF and incorporating it into your family life.
Depending on your child's age, asking your child to assist you in small ways can help normalize CF in his or her daily reality and routine. For example, some parents ask their child to bring them a glass of water for their oral
medications, vacuum the house, or spend time with them as they do their
airway clearance techniques (ACTs).
To incorporate exercise, other parents will look into a parent-child movement class when the child is still young or take their child on regular walks.
No matter what you decide, there are many ways for you to get your child involved in your care as a natural part of your everyday life.
Many parents with CF have said that one of the greatest lessons they had to learn was that they can't do everything on their own, no matter how much they may want to or believe that they can. For this reason, knowing your limitations is an important step toward effective time management.
When you are not feeling well or need time to rest, it is important to listen to your body and set aside the time you need to take care of yourself. Leaning closely on your friends and family is one great way to do this, but you can also try using creative parenting strategies to help balance your multiple responsibilities. For example, you may not be up to for taking your child to the park, but you can try finding other ways to spend time together that do not add stress on your health, such as doing a puzzle, reading a book together, or watching a movie as you do your treatments.
When evaluating your abilities and your limitations, it is important to be honest with both yourself and your CF care team about what you are struggling with. For example, ask yourself which therapies are the most difficult for you to fit in your everyday life or what gets in the way of your daily treatment plan, and bring this up during your next clinic visit. By being honest about your limitations, you can ultimately find new solutions for fitting in your treatments while also focusing on parenting your child.
As previously noted, establishing a support system that you can rely on in times of need is the key to being the best parent that you can be. Watch the video below to hear Carrie Giddens, a mother with cystic fibrosis:
Parenting with CF can be stressful, and you may sometimes feel as though your spouse, partner, or other family members are experiencing an emotional impact from having to “pick up the slack” of parenting. Talk to your care team and encourage your family members to be honest about how they are feeling. By taking the time to talk through any issues and establish multiple levels of support, you can ultimately help reduce stress and take better care of your yourself, your child, and your entire family.
Watch parents with CF and clinicians discuss:
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