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.
Although not part of my son's “official” care team, our local pharmacist plays a key role in his cystic fibrosis care.
November 15, 2016
How I Talk to My Kids With CF About Life and Mortality
How I Got My Mom to See Me as an Adult in Charge of My Own CF Care
“My son has cystic fibrosis. He was just born and we are leaving the neonatal intensive care unit today.” Those were the first words I spoke to our neighborhood pharmacist as I picked up Major's first bottle of digestive enzymes.
We were so fresh out of the hospital that we hadn't even gone home yet -- straight to the pharmacy! Our pharmacist Keri's warm smile turned sympathetic, and then she got to work. She went over how the enzymes would work, what Major's daily maximum number of pills would be and how to administer them. She then asked me what other questions I could think of.
The conversation with Keri was my first time dealing with CF on my own outside of the hospital walls. Driving from the hospital to the pharmacy, I knew that everything would change when I got home. I would no longer be only a new mom, I would be a new mom to a child with CF. I felt scared and lonely. The smile on Keri's face told me that she understood, and the patience she showed me that day prepared me to get back in the car and begin my new life.
Although Major is one of many customers for our pharmacy team, he takes a lot of their time. They never make me feel that way, though. For example, when Major was about 4 months old, he required a pretty nasty-tasting antibiotic. As a brand new mom, I was tearful about his unwillingness to take the medicine because I knew that he might wind up being hospitalized if he refused to take it.
I called Keri for advice. Instead of giving me a few tips over the phone, she told me to bring my baby into the store and assured me that we would figure it out together. Keri spent an hour with Major and me, trying different flavors before mixing grape with the medicine he required. There was a lot riding on him swallowing the medicine -- if he didn't, we would have been admitted into the hospital so that Major could get the antibiotic intravenously.
Major finally swallowed that grainy medication and was able to get over his illness at home. Had he been hospitalized, it would have meant time away from work for me, and Major would have spent more time away from his new home, where he can roam freely, and confined in his hospital room day and night.
But this isn't the only way that Keri and her team have played a key role in Major's CF care. Because of the germs that Major cultures in his lungs, we typically need a rather uncommon and costly antibiotic when he has a prolonged cough. It isn't one that any pharmacy in town has on hand. However, Keri and her staff know that when Major is prescribed something, time is of the essence. Even though it doesn't necessarily benefit the grocery store's bottom line, Keri has made the decision to keep Major's antibiotic on hand. Per her recommendation, our grocery store is willing to carry the medication overhead to do the right thing for Major.
By having this particular antibiotic on hand, Major can begin taking it the same day it is prescribed and, therefore, recover faster. Without this same-day availability, Major would have to wait overnight and potentially decline during that timeframe. Keeping this medicine at the pharmacy means a faster return to not only good health but also school and regular activities -- and it means the world to our family.
With the volume of medications being prescribed for Major, we have many questions. Keri and her team have never hesitated to spend time on the phone sorting out how certain medications are administered. Whether it's a refill, a new medication, questions about dosing or something rarer, our pharmacy works very closely with our CF clinic to get the right items into Major's hands. Members of Major's CF care team have even commented on how fabulous our pharmacy staff is. Our pharmacy is an integral part of our care team.
Above all else -- as if anything could be better than what I've already shared -- I've found a true friend in Keri. Keri and her team love hearing about all the news from the Cystic Fibrosis Foundation, including medications in the pipeline and most recently the approval of Orkambi for 6-year-olds. They've been waiting for the news with us! She cares about our family and “gets me” as a mom. We have gotten to know each other quite well over the past two years. My family has a life outside of cystic fibrosis and she has a life outside of the pharmacy. Getting to know more about her and connecting with the entire team there has been great. They say it takes a village to raise a child with CF, and this group is a big part of ours.
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. It 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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