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.
I never let my diagnosis of cystic fibrosis deter me from my dream of becoming a mother. I persevered despite the naysayers and, today, I have a beautiful son.
May 7, 2021
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I always wanted to become a mother. From an incredibly young age, there was always a doll in my arms. Whenever I was asked what I wanted to be when I grew up, my answer was always “a mommy.” There was never a doubt in my mind. It was woven into the fibers
of who I was and who I would become. That is, until cystic fibrosis came into play when I was 16.
Not long after my diagnosis, I asked my team about motherhood. I remember sitting in clinic alongside my mother and asking them about my chances
of someday becoming a mother -- the one thing I had always wanted for my life. And I remember the quiet hush that came over the room, and how Dr. Weinberg and Dr. Orenstein (better known as Dr. O), shared a silent, somber glance before addressing
me. In that silence, I laughed uncomfortably and reassured them that I didn't need to know out of any urgent need, but that I was someone who planned. I was someone who wanted to know exactly what she was up against. I needed to know -- just how big
was the mountain before me?
For a while after they told me it would be difficult to have children, I sat in my grief, which was mixed with a growing determination to not give up on my dreams of motherhood.
I remember searching and searching and searching for someone -- anyone -- who had cystic fibrosis and had become a mother. One person. I prayed to find one person who could give me hope -- someone who could show me that it could be possible and that
it was appropriate to want what I so desperately wanted for my life. All I needed was one person.
I remember the tears I cried upon finding her -- when grief was replaced with hope. I still had a mountain to climb -- and I knew that -- but now, I had a guide. Somehow, I'd make that climb.
Now, I can't say this with certainty, but I'd venture to guess that mountaineers Sir Edmund Hillary and Tenzing Norgay were met with a lot of naysayers when they announced their plans to tackle the “unclimbable” Mount Everest. Surely there were those
people who expressed their concerns that they'd face insurmountable challenges, or they'd never survive it; that even if they did reach the summit, the descent could still kill them. Still, they defied the odds and became the first to reach the summit
Suffice it to say, my climb of this particular mountain had its fair share of naysayers, too. I remember my dentist (of all people) sharing a story of his niece with CF dying after trying to have a child and how she “had wanted too much.” I remember walking
out of his office -- mid-appointment -- with hot tears streaking down my cheeks. I remember the primary care physician who asked Kevin, upon his request for genetic testing, if
it would impact his decision to marry me. I remember the conversations and concerns of family members, hushed in some cases, of whether or not we should even try for this -- that it would be hard on my husband to be a single parent and raise a child
alone. Because clearly in this scenario, everyone assumed I'd be dead.
Still, I knew. I knew that motherhood was my mountain to climb. Because like Hillary said, “It is not the mountain we conquer, but ourselves.” I would not be content until I had conquered this, and so, I climbed. For month after month, I climbed. And then came those two pink lines. A heartbeat. A flutter. A kick. A wide world of possibilities. My every wish imagined. Motherhood.
The day they placed my sweet Henry James in my arms, I knew I'd never do anything else as monumental with my life. This was my reason for being.
There is no greater joy than his giggle, no warmth quite like his sleepy morning snuggles.
There's no better sound than his soft little, “I love you, Momma.” I was made to be his mom, to make that climb, against all odds.
I know as he grows, there will be times that will be tough -- times that will test my resolve. There will be moments where CF will throw new boulders and mountains upon the path of my life. And when it does, I'll look at Henry James -- my sun rising over
the summit -- and I'll smile and start climbing, because I've already conquered my Everest.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Jennifer, 36, was diagnosed with cystic fibrosis when she was 16 years old. A northern Virginia resident and Pittsburgh native, she spends her days teaching elementary school. Outside of the classroom, Jennifer focuses her energy on supporting other moms
with cystic fibrosis throughout their motherhood journeys. She enjoys cooking, writing children’s books, and memory keeping. Above all, she loves spending time outdoors, hitting the trails with her two dogs, husband, and sweet son, Henry James.
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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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