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.
CF complicates even the simplest-seeming routines. But it also has helped us learn to listen to be strong, listen to each other, and love one another better.
August 20, 2019
What I Learned Preparing for a Lung Transplant
Ask a Case Manager What Should I Consider When Going to College
I had a grand, carefree, conflict-free vision of what being a “grown-up” and a parent would be. That stemmed from the childhood view of the family I grew up in -- a very happy, loving place where my parents allowed my sister and me to grow up unaware of the challenges they faced to raise us. In my eyes, life was easy and nearly always positive and upbeat. But, now as a parent of 9-year-old Liam and 5-year-old Tate, a CF spouse, and a full-time teacher, I've learned a secret: there's no “normal” in life, and being a grown-up is certainly not carefree or easy.
I've learned that all families have their struggles, their ups and downs, and their successes -- and it's all these things melding together in a constantly evolving “normal” that sets the tone for each household. I'm pretty sure that the “normal” I thought of when picturing adulthood doesn't exist for any “real” grown-ups, CF household or not.
CF can make finding your family's “normal” harder. Treatment times, sickness, and depression all create extra hurdles to jump, hurdles that can make the day-to-day more challenging for all the members of your household -- the person with CF, their support people, and, in our case, kids.
This came to the surface a few Saturdays ago when our oldest son was supposed to be at the pool for a 7:30 a.m. swim meet warm-up. Thinking I was doing my husband, Chad, a favor by giving him extra time to sleep in before his treatments, I decided that I would take Liam early and Chad could join us closer to 9 a.m. when the meet actually started. The next morning, as we left Chad alone at home, it was clear he was feeling lonely and upset to not be with the family. I assumed I knew what Chad wanted, but I was clearly way off. We needed to do our normal duty of getting our swimmer to his meet early, but we also needed to do our family's “normal” of getting treatment time in before the day could truly begin. CF made getting out of the house early more complicated and, as a result, Chad was left feeling crummy, and I was too. Hopefully, emulating my parents' example, I was able to play it off enough, so Liam didn't realize we had a conflict because of his swimming.
Vacations are another time where CF impacts our family more than others. We often travel with other families. They do their best to understand CF and what treatments entail for Chad, but they don't live it regularly. Telling our friends that even though we're on a fun vacation Chad needs time to do treatments can be complicated. Recently, on a beach vacation, Chad woke up earlier than the rest of the group so he could join our family as we headed to the beach in the morning. On another trip, Chad missed out on morning donut trips and swimming to do his treatment so he could wake up with the rest of the family. Mind you, with our kids, he's not enjoying a luxurious sleep-in, by 7 a.m. we've risen and are already shining!
From my perspective, both approaches have their advantages -- I want Chad to be with our family, but I also want him to get the extra rest that vacation is supposed to bring. The part that's hard, though, is finding the best compromise for everyone, while also allowing Chad to make the choice he wants to make. The kids don't always want to wait on Dad to finish his treatments before heading to the beach, and Chad doesn't want to feel rushed doing the necessary steps for a healthy day. We've figured out some ways to make the planning more balanced for all, but it's a constant conversation to find a plan that works for everyone.
There are other times when CF gives me, as the non-treatment-needing adult, an unexpected break. Liam and Tate adore spending time with Chad while he does his breathing in the morning. They play games, watch television, build Minecraft worlds, and battle each other on the (virtual) FIFA turf. This leaves time for me to take care of housework, laundry, or, if I'm being more honest, have some “me time.” We've figured out that while the boys are all in the basement during treatment I can go for a run or catch up on phone calls. I'm sure that Chad would love to have time for himself, too, but his CF demands treatment, so he doesn't always get the extra time I have.
There's one more truth I've learned: CF can make your family stronger. Chad, Liam, Tate, and I are more connected than many families and we think CF is a big part of this. Together, we advocate, fundraise, and hope for a cure and for dad to be as healthy as he can. This means working together, with so many other impactful, impressive CF families for the common good. Being patient, helpful, and empathetic is something learned over time. Living in a CF house is teaching Liam and Tate (and Chad and me) to appreciate every day, every person, and to do our best to spread love to all we come across.
Here are some tips to find your “normal” (from someone whose “normal” is constantly changing):
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Spouse of a person with CF
Julie is an advocate for all things CF. She and her husband, Chad, are inspired and motivated by volunteering with the Cystic Fibrosis Foundation in numerous ways. Formerly a co-chair
of a 20+ year dinner dance, Julie is now a mentor with CF Peer Connect, a Tomorrow's Leader, the leader of a Great Strides team, and is serving as the 2020 Volunteer Leadership Conference Co-chair. Julie was born in Michigan and currently living in
Alexandria, Va., where she is a mom to two boys and a full-time teacher. She enjoys running, going on adventures with her family, and scouting out local food gems. Follow Julie and her Great Strides team online on Instagram @inspire_spero and @julieriedy, Twitter @julie_riedy, or on Facebook.
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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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