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.
Summer 2020 is simply not like the others. For me, a teacher and CF spouse, the unknown is taking away some of the normal summer bliss. But it's been hardest on my husband who feels he is holding us back as stores and restaurants gradually reopen.
July 10, 2020
Being Left Out as a Black Man With CF
Addressing Racism and Discrimination
The other morning I was talking to my sister, Meghan, and being brutally honest with her about how my day was going. I'm a teacher, a mom of two boys (Liam, 10, and Tate, 6), and a spouse to Chad, who has cystic fibrosis. Like a lot of the world, we've been quarantined for a while now. Our isolation started on March 13, and we took it pretty seriously. With Chad having cystic fibrosis, COVID-19 was more likely to cause bigger issues for him than someone from the healthy population.
Meghan is one of the few people I “give it to straight,” and I didn't hold back that morning. School had just ended, the rest of the world seemed to be opening up, and our family, well … wasn't. For us, summer is the part of the year our family shines. The break from teaching renews my energy and gives me the opportunity to put it toward my family. Liam thrives at swim team, Tate and I complete dolphin ride after dolphin ride in the pool, and Chad grills more delicious food than our family can eat. This summer though is going to be much different.
To maintain the most responsible behavior, our version of social distancing is by the book. Actually, it's probably a different book titled something like, “I See Your 6 Feet and Raise You 10.”
Until the first weekend in June, we had not been out to shop, to see friends in their backyards, or to pick up food. Then, that weekend, on the heels of everything opening up, we decided it was safe to place a curbside order from Home Depot. As we drove there, the number of people walking around Main Street was surprising, and the lack of masks made my heart sink. I saw diners, groups of runners, and shoppers who seemed to be back to normal.
But for our family, we are in a different space, living in an indefinite quarantine. We're not even close to normal. The boys and I will go on bike rides, being careful to wear face coverings and stay off main roads. Today, for the first time ever, Liam, Tate, and I went down to the local field early in the morning in the hopes no one else was there, so the boys could kick the soccer ball around. It was the best 14 minutes I can remember with them. This was the most “out there” we had been since March 13. Still, Chad stayed home, unsure if it was safe for him to venture out. Hopefully, by the time you read this our family is more comfortable and heading out more; but for now, we're not.
Although I'm seeing so many levels of social distancing (or lack thereof), I can't help but feel like CF is making itself known now more than it ever has. We don't know when the risks will be low enough that we can get back to our normal. Major questions keep repeating: Can the boys start school in the fall? Can I go back in the fall to teach? When can we go out to dinner? When will Chad feel comfortable to return to our very missed “normal” life?
What I do know is that although his physical health is stable, currently Chad is feeling the mental strain of CF harder than he ever has.
He feels like he's holding us back. What I want him to know is that although EVERYTHING has changed in some ways -- also nothing has changed. Our family remains the most, most, most important thing. We are the family we are because of each of us -- Liam, Tate, Chad, and me -- and, yes, CF is a part of our family identity also. We would not be the family we are without each other, and I would not trade any decision Chad and I made building our lives for the world.
The boys reflect on the highs of the day nightly, and they are loving the family time, games, and backyard fun. For the first time since the boys were born, quarantine has brought us family dinner every night. We have picked up some new hobbies, including building raised bed gardens and are about to embark on building a new deck.
I wish I could take any CF guilt from Chad and help him believe that I would not change a thing about him, his CF, or our family -- and I am certain the boys would not either.
Although I talked to Meghan while at a low point in my quarantine, I was candid and admitted that I was not sure I even wanted summer to come this year. She did what I am urging you all to do: She listened. She didn't try to tell me I was wrong or that this would be over soon. She didn't try to lessen the tug-of-war I am living of being a mom and a supportive wife. She listened and then she called me twice again that day and again the next to be sure I was OK. I was. I am. She initially hit me at a bad moment and then the next times she called I was in a totally different mindset, learning the ukulele and then playing backyard baseball.
Some days certain decisions for the future feel too large. Chad and I try to remember that most of the time those decisions are, well, for the future and not for today. Like the normal summer I am longing for, the mourning process I shared with Meghan is a natural experience because we are adjusting to the collective loss of our “normal.” This is the truth for all of us -- not just CF families -- and it has given our family an opportunity to experience the joy in simple moments.
Please stay vigilant. Wear a mask and check on the people who you know may be feeling this more than others. While the world reopens and people flock to their favorite places again, remember that some of us are not there yet.
Our family will get back to our (very loved) normal again -- just like all families will. We're all in the same water, just not in the same boat.
Interested in sharing your story? The CF Community Blog wants to hear from you.
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. Formally a co-chair of a 20+ year dinner dance, Julie is now a mentor with Community Voice,
a Tomorrow's Leader, the leader of a Great Strides team, is serving as the 2020 Volunteer Leadership Conference Co-chair, and has been featured on the Breaking Through podcast. 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.
Share this Post
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.
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