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 was pregnant in the early 2000s, there was little information available about cystic fibrosis and pregnancy, and I didn't even know what concerns to address with my providers. I am glad more women with CF have shared their family building experience.
February 9, 2021
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Growing up, I always knew I wanted children. I adored spending time with and taking care of my younger cousins, babysitting, and, to this day, my husband makes fun of me for excitedly cooing at every baby we pass on the street. I was never told that my
having cystic fibrosis would prevent me from having a successful pregnancy. Nor was I told that it was a rarity, so I assumed that when I was ready, I
would start a family just like many of my peers. I started seriously thinking about becoming pregnant when my husband and I were dating.
When I first spoke to my CF doctor about having children, she was anxious, but supportive, and told us, “She's not getting any younger, so the sooner, the better.” I was 29.
The health of women with CF during pregnancy was not being tracked then. She let us know my health could go three ways during pregnancy: It could decline, it could get better, or it could stay the same. She encouraged me to spend the next year getting
into the best possible physical and “lung” shape. My husband, Steve, got genetic testing done to make sure he didn't have any CF mutations. At that time, there were not many women at our center who had given birth, but my doctor referred me to an
obstetrician/gynecologist who had seen another of her CF patients and, therefore, was considered experienced. I expected that it would take time to get pregnant, not because, as I later learned, women with CF have thicker cervical mucus that can make
it harder to conceive, but because my mother had had a hard time.
My health did not decline during my pregnancy. My doctor attributed that to my long torso, which gave the baby enough room to move without hindering my breathing. I did not have to worry about which IV antibiotics were safe during pregnancy because I
did not get sick. Not to say it was uneventful. My initial quad screen came back low, indicating a potential birth defect, and, if not for having an incredible genetic counselor advocating for me to retest and further analyze the baby through an ultrasound,
I would have had to endure an unnecessary amniocentesis. I was put on bedrest in my third trimester when my OB worried that the baby wasn't growing because I wasn't gaining as much weight as her non-CF patients. At 37.5 weeks, we found out that my
amniotic fluid was low and immediately started inducing labor. The next day, I gave birth to a beautiful, healthy, 6 pound-6 ounce baby girl.
I realize how lucky I was back then, but what a difference it would have made for me to talk to other pregnant women with CF.
It was 2002 when my husband and I started planning with my doctor. My CF center had already stopped adult support groups because of cross-infection. I had no other friends with CF to talk to about what it meant to be pregnant with CF: the risks, anxieties,
pregnancy vs. adoption, and what to do if my second quad screen had shown defects -- could I care for both myself and a baby with severe health issues? There was no Facebook, no social media, no widespread texting. We were not yet fervently researching articles on the web -- not that there would be many written on the topic anyway. I didn't even know what concerns
to address with my providers.
That is why I am so proud to be part of the Cystic Fibrosis Reproductive and Sexual Health Collaborative (CFReSHC). I first discovered CFReSHC during a sexual and reproductive health MiniCon put on by the CF Foundation and was floored that it never occurred to me that, of course, cystic fibrosis would affect issues like menstruation, contraception methods, pregnancy, and menopause. I began attending Patient Task Force meetings
and heard from other women who shared issues that I thought were mine alone. I feel fortunate to be part of a group of patient partners, researchers, and clinicians whose goal it is to further research on sexual and reproductive health using the experiential
expertise of adults with CF assigned female at birth.
It would have been so beneficial to have a group like this when I contemplated starting a family. It is my wish that future generations of young women and adolescents will be able to use CFReSHC's work to make informed decisions about their sexual and
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Melissa was diagnosed with cystic fibrosis at the age of 5. After briefly working in the music industry, she became a social worker, which heightened her interest in politics. Melissa began advocating with the CF Foundation in 2011 and served as National
Advocacy Co-Chair for 3 years. She continues to advocate in Washington, D.C., and New York on behalf of the Foundation for policies that will help extend and better the lives of people with CF and their families. She is a member of the Cystic Fibrosis
Reproduction and Sexual Health Collaborative (CFReSHC), which produced the Cystic Fibrosis Sexual and Reproductive Guide -- a guide written by patients for providers and patients on topics such as body
image, contraception, hormones, family building, and more. Melissa resides in downtown New York City with her husband, two children, and two guinea pigs.
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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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