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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
Our parenting style wasn't something my husband and I figured out before our son was born. But given all the unexpected challenges CF throws at us, that flexibility has helped us grow as parents, able to change course if something doesn't work.
April 22, 2019
Why We Need to Stop Repressing Our Emotions
Hiding My CF to Fit In Hurt My Health
Discuss how you want to parent your children BEFORE you have them, they said. Who is “they?” Everyone! Parents, siblings, faith communities, and friends. Does anyone actually do that? Maybe you did -- clearly, we didn't. But I now believe that people give this advice largely because there are some things they wish they'd discussed, things they wish they had known. Still, it just isn't possible to know it all before having kids. Finding common ground on how to raise a human, in partnership with another human, is just really challenging some days.
We want to get it right and shape a productive member of society. Give them structure without overwhelming them. Give them boundaries without stifling them. Love them without smothering them. It's a complicated dance, one filled with the greatest joys and sorrows I've ever known.
So, no, we didn't discuss how we'd raise our child. We discussed birth plans, feeding and diapering, nap schedules, sleep training, all the technical stuff. But that isn't how you raise a child. How you parent, how you discipline -- we didn't discuss any of that. As it turned out, I think that worked in our favor. No one knows what their child will be like or how they'll change as they grow up, and your parenting style has to change as your child does. We didn't know that our sweet son would be tough as nails yet tender-hearted, or that he'd be articulate beyond his years, or that he would love superheroes. We also didn't know that he would have cystic fibrosis.
After we climbed out of the fog that surrounded us the first few days after our son's diagnosis, we stood as new parents with one leading core value: We had a baby. That meant first and foremost, we had a baby, who would become a child, a teenager, and then a man. Our son is many things besides a person with cystic fibrosis. So, we should treat him as such and expect that everyone in his life do the same.
This core value has served us, and I like to think our son, so well. It is the guiding light in all decisions we make. First, we plan our day, then we determine where to fit in CF care. At this point in the CF journey, we are able to do that, and we remain thankful for that.
As our little baby has become a preschooler, we've had some moments where we had a baby hasn't worked. Recently, our little guy had a stretch where he was poked and prodded a lot more than normal. Lots of blood draws, extra doctors' appointments, and many new things that he (and we) weren't used to. As usual, we forged ahead with encouragement and love, almost becoming cheerleaders at times. We were getting through it.
Then one night after a blood draw, it was time to remove the tape around the site where the needle had been. The tape used was much stickier than normal. My son asked me to get it started, then he would pull it off himself. As I struggled to pull up the corner, I knew we were in for trouble. His face immediately crumbled as I saw his skin lift up from the sticky tape. He ripped his arm away. My husband, Drew, was nearby, and we both started to encourage him by reminding him it would only hurt for a second and it was just like a Band-Aid -- though it clearly wasn't. We were being cheerleaders, piling on encouragement. He let us pull again for a moment and then he burst into tears another time. He was now adamant that we leave the tape on him forever. Drew and I were getting frustrated. We were all tired and wanted to get to bed. We continued to go in circles, trying to convince our son to let us remove it, telling him it wasn't going to hurt that bad. It really wasn't in the grand scheme of things -- he's been through worse for sure.
As we told him how it wouldn't hurt, and I saw how frustrated we were, I realized something. It wasn't the worst pain of the season for our son, but it did hurt. To him, the pain was bigger than just the tape. It was not the first pain of the day, so it carried some emotional pain, too. I told him to just sit tight and start coloring a picture, and asked Drew to come to the kitchen with me.
We huddled. I told Drew we had to let our child own this pain and we couldn't keep telling him it didn't hurt, because that wasn't true. We needed to let him be mad.
Drew was resistant at first, but when I said our current approach wasn't working, he agreed we had to pivot. We went back over to our little guy with a new and more honest resolve and told him it was up to him to decide how to remove the tape at his own pace. We told him that we knew it hurt and it wasn't fair. He decided to slowly remove the tape, which probably hurt more than ripping it off, but that was his choice. I held his hand and told him I was proud of him for working through it. He asked me not to talk anymore, so I honored that. When the last bit of tape came off, he collapsed into our arms, letting all the emotions of the past few weeks spill out. I told him it was OK to be mad, Drew told him it was OK to feel terrible.
We took the opportunity to talk that night about how our son had a lot of extra things to do because of cystic fibrosis. That day we really couldn't lead with we had a baby. We had to focus on the other value that doesn't always lead our decisions -- we had a baby who has cystic fibrosis. Because of CF, we had to parent differently. Because of CF, we had to pivot. And because of CF, we had to huddle after the first play to come up with a better one. Because our child does have cystic fibrosis, and sometimes that will have to impact our parenting philosophy.
Drew and I decided that night that we needed to have a signal to each other if we ever needed to change our approach, or if we ever needed to huddle again. We haven't had to use it yet, but knowing it's there has made us feel more like a team. We don't have to always agree on how to parent, but we do have to agree that we will find some common ground and move forward. With this comes better trust between Drew and me that we will speak up if unhappy, and I hope that our sweet son trusts us because he can see us considering his changing needs.
We had a baby. And he is kind, tough, tender-hearted, and articulate. He is wildly funny, confident, and he has cystic fibrosis. And if you know Drew, we should have always known that our son would like superheroes.
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Mother of a child with CF
Jaclyn is a mother to her son, Major, who was born with cystic fibrosis. A graduate of the University of South Dakota, she now works in the financial services industry and also runs an online health coaching business. Jaclyn is a state advocate for the Foundation, a member of the CF Parent Advisory Council at Blank Children's Hospital, and an active fundraiser for Great Strides. She also serves as the Foundation's 2019 national advocacy co-chair. Jaclyn lives in Des Moines, Iowa, with Major, her husband, Drew, and their dogs, Eason and Lennon. Follow her blog, MAJOREASON.
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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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