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.
When I met my husband, who has cystic fibrosis, he was listed for a double-lung transplant. I thought I was prepared for that. I wasn't.
February 16, 2021
What It’s Like to Experience Food Insecurity as a Person With CF
Not Letting CF Guilt Hurt My Relationship
I first encountered my now-husband, Chris, in October 2017 on an online-dating app. We followed each other on social media, and I remember seeing posts from a well-rounded man who spent lots of time with his family, made amazing art, and sang and played
the guitar. Despite my somewhat legendary social media sleuthing skills, I missed something big -- Chris had cystic fibrosis and was listed for a double-lung transplant.
We started dating and I started planning. I scoped out parking situations ahead of time to avoid unexpected long walks; I called my friends and family before we came over to make sure no one was sick; I read everything I could about cystic fibrosis and
the lung transplant process so I knew what to expect.
In March 2018 -- five months and one hospitalization after we met -- Chris started getting “dry run” calls for lungs. I thought I was prepared for my role as the girlfriend of a transplant recipient; I thought I really didn't have to do much. He already
had a care plan in place with his dad for after transplant; he has five siblings (including two with CF) who provided a lifetime of support; and he had all of the insurance issues worked out. When he finally went into surgery on June 12, 2018, I found out that, emotionally, I was not prepared at all.
It had been easy to forget just how sick he actually was. Through all of my careful “end-stage-lung-disease-friendly” planning, I had crafted a reality where I didn't have to constantly think about his low lung function and health. We didn't hike, travel,
go on bike rides, or even leave the house for more than a few hours so he could keep his nebulizer schedule.
It was our normal and it felt normal. In reality, I was just seeing what I wanted to see.
While Chris was a few hundred yards away in the operating room at University of California, San Diego, I went to the parking lot to take a video call for the CF Foundation's 2018 MiniCon: Transplant planning committee. The members
of that committee, including fellow “CF spouses,” were some of the first people I told about Chris's transplant. Some couples had been together for decades, and some, like Chris and me, had been together for only a short time. I had known Chris
for only seven months, so my experience with CF was still new and confusing. In the hours since his surgery began, I felt like I had already burned out my family and friends with my extremely specific worries, so just being in the (virtual) presence
of so many people I didn't have to rehash the nuances of CF and transplant to was liberating. I needed this very unique support system.
Like many of the spouses and loved ones I have met since then, I still deal with crippling anxiety over health issues; I still experience disturbing
flashbacks to beeping machines and piles of tubes; and my blood pressure soars every time I hear Chris cough.
Of course, I wish Chris wasn't born with cystic fibrosis, but I embrace the experiences because of CF that give us a common, powerful, goal to always work toward. We became a new family when we walked out of the hospital together, 15 days after
Since then, my journey as a transplant spouse has pushed me into, and through, nearly every emotion that human beings are capable of.
Soon after Chris's transplant, we got engaged and moved to Orange County. On Oct. 3, 2020, we were married in front of our immediate families -- complete with masks and lots of hand sanitizer. It felt like both a beginning and an end -- we had been through
so much to get to that point but we also knew it was just the start of a lot more.
Our day-to-day is much like many other couples: never knowing what we are going to have for dinner, movie nights on the couch, and road trips to visit family. We are lucky that most of our days are like that. But, right now, the home health nurse is here
administering a routine three-hour infusion and there is a giant box of medication on the counter waiting to be put away. And Chris spent hours on the phone this week trying to straighten out his insurance that lapsed after we got married.
Because of CF and transplant, some things are very different in our house and in our marriage. Most of these differences are fairly imperceptible and we don't always choose to disclose. However, CF and transplant are major forces in our lives.
Usually, they propel me forward in positive ways but sometimes they make me feel helpless, afraid, and at the mercy of chance. I struggle with feelings of guilt that I'm the healthy one and I have not had to personally deal with the physical and emotional
struggles of a CF and transplant patient. I had to, and have to, deliberately accept that my situation is valid and worthy of support, too. That's why the virtual connections I've
made through the internet continue to be so important to me; I cannot do this alone.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Wife of a person with CF
Brenna is a marketing professional who lives and works in Orange County, CA. She has been involved with the Cystic Fibrosis Foundation since 2018 when she has served as a volunteer workgroup member for three MiniCon: Transplant events and the 2020 FamilyCon.
Shortly before her husband, Chris’s, transplant, they co-wrote and illustrated a children's book about CF and the transplant process. Brenna loves podcasts, cats, going to Utah, and medical minutiae. You can message Brenna on Instagram if you have questions or would like to connect.
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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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