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.
It is hard to know how much to share with our kids. We want to protect them, but we also need to give them age-appropriate information or else their imaginations will run wild.
January 13, 2016
My Top Five Instagrammers of the CF Community
Healing One Wound, Opening Another
As a mother with cystic fibrosis who has borne two healthy children, I constantly worry about the
anxiety that my CF has caused my now 8 and 10-year-old. While I try to normalize my disease for them by openly doing my
vest treatments, taking
my pills and even at-home
antibiotic treatments as if it were just another daily task in our busy lives, I knew that one day they would figure out that their friends' moms don't do “mommy's machine.” And that day came before I was prepared for it.
A few years ago, while participating in our local
Great Strides, I became so busy organizing my team that I did not realize that my daughter was listening closely to the emcee of the walk discussing the life expectancy of someone with CF. At the time, I was quickly approaching that age. My daughter spent several days internalizing this devastating information before she burst into tears and told me what she had heard. We had a long talk about how, while it is true that there is no cure for CF, I diligently
take care of myself to maintain my health.
Unfortunately, they also know that their uncle (my brother) died from CF decades before they were born. As much as I explain to them that there are varying degrees of CF, and that my brother had a much more severe case that me, it is not hard to see that my health weighs heavily on their minds. Sometimes, it weighs on my mind too. It is the elephant in the room. Whenever I even lightly cough in front of my son, he runs behind me and whacks me on my back to help me get the mucus up. Last year, I was admitted into the hospital for the first time since they were born. They acted okay about it, but there was definitely some heightened emotions following that stay.
Today, my daughter gave me some insight into their fears.
I was driving her to school this morning and we were talking about taking deep breaths to relax. From behind my seat I heard a small voice ask, “Does it hurt, Mommy?”
“Does what hurt?” I replied. I, then, realized what she meant. “Do you mean having CF?"
“Yes,” she said quietly (my daughter is never quiet). Just like after that Great Strides years ago, she gifted me an amazing opportunity to open up about CF, based on her comfort level. I explained to her that having CF does not hurt; that, for the most part, I felt completely normal. I told her that sometimes I get sinus headaches or colds just like she does, which doesn't feel good, but otherwise I feel fine and try not to focus on it.
For me, cystic fibrosis does not hurt all of the time. While I cannot get as much air into my lungs as she can, or breathe as well or deeply, it has been this way my entire life so I don't know any differently. I did her tell honestly that I hate having to do my machine twice a day and take lots of medicine, and I resent that I am not able to work full time because my body needs to get more rest than other people's do. She had no idea that was why I don't work. She knows that I
advocate on behalf of the Cystic Fibrosis Foundation to, in her words, “Tell the government to get people the medicine they need,” but that I do not have a “job” like other parents.
I made sure to share with her that, despite all of it, I am so lucky to have been able to have children and still maintain my health. Being a mom is the job that I always wanted to have.
It breaks my heart that she thinks I suffer all day, every day, so I am relieved that we had this conversation today. It is hard to know how much to share with our kids. We want to protect them, but we also need to give them age-appropriate information or else their imaginations will run wild. Now that there is a focus on patient
emotional wellness, I implore other adults who are lucky enough to have families of their own to speak with their
local CF care centers and
CF Foundation chapters about the importance of family therapy and how to talk to their children about CF. We talk about
caregivers of children with CF but as more of us live into adulthood, it is now time to consider how we speak to the children of CF parents.
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 interested in politics. Melissa started volunteering for the Cystic Fibrosis Foundation Greater New York chapter on the Great Strides organizing committee and became the State Advocacy Chair of New York in 2011. She recently served as the National Advocacy Co-Chair for the Cystic Fibrosis Foundation until 2018. Because she can't stop, 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. Melissa resides in downtown New York City with her husband, two children, and three guinea pigs.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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