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.
Because of the shortened life expectancy projected for those with cystic fibrosis, I was always cautious about the idea of having children. Those fears melted away after I started Trikafta® and received the greatest surprise of my life.
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For years in Kansas City, Kan., our local Cystic Fibrosis Foundation chapter held a fundraising event called the Breath of Life Ball. My sister and I attended a few times with our parents, a huge treat for us because it was held at a fancy downtown hotel
with amazing food -- and we were all about the food. We got to dress up and drink all the Shirley Temples our preteen hearts desired.
One year, I think I was around 12, the fun drained from the evening as I learned about the median life expectancy for people living with cystic fibrosis.
I distinctly remember sitting with my sister at a table in the back of the ballroom. Each year at the event, after guests had been fed dinner and a cocktail or two, a video played on the big screen, intended to pull at heart strings and loosen purse strings.
That year, the video presented me with information that, somehow, I hadn't ever heard: the median life expectancy for someone living with CF was (at the time) around 40 years old. As a 12-year-old, 40 still seemed pretty far off, yet I knew that my parents
were creeping towards 40 and they didn't seem that old.
I sat there and tried to look unaffected, aware of my 10-year-old sister next to me, wondering if she had heard that same sentence. Meanwhile, my mind was whirring with all the implications of this new information.
I didn't talk to my parents, my doctors, or my sister about what I learned that night. It seemed too delicate a conversation, like if we talked about it, we would breathe it into being. Instead I internalized it.
Through high school, college, my first job, and into adulthood, I planned my life around me -- my interests, my education, my travels, my whims. I knew I wanted to get married -- that, I had always felt - but a mother? That title wouldn't be mine.
My junior year in college, 2013, I met the man who would become my husband, Kory. At one point very early in our relationship, I was thunderstruck by the overwhelming realization that I never wanted to not know him. Inevitably, my mind wandered
toward our life in the future.
It wasn't long before I knew on a visceral level that he would be an exceptional parent, and I began to doubt my conviction that parenthood wasn't for me. Because now it was about not just me, but us.
My internal tug-of-war was anchored on one end by wanting a family with Kory and on the other end by doubting my longevity. I wrestled with feeling like it would be selfish to become a mother because I didn't think I would live to old age, or at least, I assumed I would be in chronic, poor health; it twisted my heart to think about leaving our potential future children motherless earlier than would be fair.
A couple of years into our relationship, hope began to mount in the CF community about the introduction of a new generation of therapies called modulators. In late
2019, after much excitement and anticipation, Trikafta® was approved and made available to me.
I began taking Trikafta in December 2019. I was at the dentist when -- to my embarrassment -- my first dose started taking effect. The classic purging of the mucus began, and I couldn't stop coughing. Over the next couple of months, my lungs remained
clearer than they have been my entire life. It was a strange and wonderful feeling.
I had heard about people in the clinical trials “feeling like they don't have CF anymore,” but I couldn't imagine it or believe it, until I felt it myself. It was happening to me -- I felt like I no longer had CF.
Then, I began suspecting that something else was different with my body in February 2020, although I didn't think much of it because everything was changing since starting Trikafta. I mentioned my breast tenderness and, ahem, enlargement to my
mom and she suggested I get a pregnancy test. I rolled my eyes, but suspicion lodged itself in my mind, leading me to buy a two-pack of pregnancy tests
the next day on the way to brunch with my husband.
The test was positive. What?! Kory and I were in total disbelief -- thrilled, but just … what?! We had not done any kind of fertility treatment.
That week was surreal as we anxiously counted down the days until my first sonogram. Partway through the exam, the sonographer paused and excused herself while she stepped out for a moment. Oh, no. Something must be wrong. We've both seen enough movies
to know it's never a good sign when the sonographer steps out without explanation.
She came back in the room with a more senior colleague, and our anxiety intensified. We stayed mute as we waited for the other shoe to drop. “So, we're seeing two sacs,” were the next words out of the colleague's mouth. “Um … what does that mean?” I blurted,
even though I knew the answer. Kory immediately lit up as she informed us that we were having not one baby, but two! This was the biggest surprise of my life.
I often marvel at how fortunate it was that my mental and physical health had improved so significantly and at how perfect the timing was. Pregnancy went incredibly smoothly, and I largely credit Trikafta and the active management of my depression and anxiety.
The year prior had been filled with mental health struggles and an inability to gain and maintain weight; my pregnancy seemed to come at a serendipitous moment. Even though the coronavirus was creeping into the country and 2020 was about to become historic for many reasons, my personal life was as stable as it had ever been.
Our twins, Alder and Winslow, arrived early at 34 weeks and five days on Oct. 2, 2020. Despite being premature, they were born completely healthy. They spent 12 and 14 days, respectively, in the neonatal intensive care unit, and I spent a few nights in
an adjacent unit recovering from my C-section.
The first few weeks at home -- during a pandemic nonetheless -- were made up of many of the most difficult days of my life. Kory and I were in a constant state of physical, mental, and emotional exhaustion, and help was much more limited than it would
have been if we were not living in the time of COVID-19. But, aside from some abdominal issues and post-partum anxiety, I was completely healthy. How on Earth would I have done this with my former CF baseline?
One year since starting Trikafta, we have beautiful, smiley, squeaky infant twins. Kory and I are still in disbelief sometimes. We have babies? We have babies! 2020 simultaneously flew and crept by, full of the highest highs and lowest lows. But here
we are, home with our healthy infant twins. What a year.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Morgan lives with her husband, Kory, and twin babies, Alder and Winslow, in rural northeast Kansas where she enjoys gardening and chicken-keeping. She has many interests and is always entertaining her curiosity, but her mainstays are spending time outside,
reading, writing, photography, and cultivating a relationship with plants. She grew up with two younger siblings, Allison and Mason, who also live with CF. You can follow her on Instagram. P.S.
Beets, Bears, Battlestar Galactica.
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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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