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.
After years of being treated as an oddity, I want people to acknowledge that I am a Black girl with cystic fibrosis. I want my voice to be heard.
September 8, 2020
My Return to In-Person Clinic Visits
CF Prepared Me for Isolation, But Not Homeschooling
Okay! I'm about to spill some tea -- the tea about being a Black girl with cystic fibrosis. CF and I are pretty familiar with each other, so I refer to her as Cynthia Fibrosis. Cynthia and I have known each other since I was 5 months old. I was experiencing symptoms of CF, such as Cynthia preventing me from thriving and her making my stools smell like a grown man's. After being tested for numerous diseases in the hospital for three weeks, they finally tested me for cystic fibrosis.
CF is so rare in African Americans that testing me for CF was the last resort. Once I was diagnosed, some hospital staff suddenly started to speak Spanish to me, assuming that I must be mixed with Spanish descent to have CF. It's not a disease that most people are aware of, but it's especially uncommon in the Black community. Less than 5 percent of people with CF in the U.S. are Black, according to the Patient Registry.
As a young Black girl with CF, the response that I got usually went two ways. The first way was that I got the royal treatment, as if I was the poster child for Black girls with CF. Several times when I participated in CF walks, they would let me be the one to cut the ribbon to start the walk. People would recognize me all the time because I was the only Black girl there.
The second response I would get was of curiosity or confusion. For example, after finding out I was a CF patient, people would ask a plethora of questions about my diagnosis. It eventually would turn into an Ancestry.com or 23andMe session where people were trying to pinpoint how a Black girl had CF. These responses came from everyone from curious strangers to doctors and nurses who were just completely shocked to find out that I had it. I got used to being the only Black CF person.
The representation of Black people wasn't expected in a population in which it is rare for us to exist.
I don't expect the “elephant in the room” to be sugar coated. Honestly, I would actually feel better about being acknowledged as a Black girl with CF and being reassured that my voice will be heard. The “tea” about being a Black girl with CF is that my voice isn't always heard. I've learned over the years that I have to stand up for Cynthia and me. The good thing is that I know Cynthia very well. I know her like the back of my hand because my doctors encouraged me to be educated about her. This has been beneficial because I know when she's about to act up even before she does. Unfortunately, not everyone knows their bodies, like Cynthia and me.
Black people's voices have struggled to be heard for years, especially in the medical field.
More than ever before, I think it's extremely important for the CF community to be educated about different races and cultures that are affected by CF. Over the past few years, I've seen and heard more about Black people having CF. This is another reason why it is a perfect time to be educated and to encourage representation of us. All our stories deserve to be heard.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Lauren is a Black girl who was diagnosed with CF when she was 5 months old. She attends Texas A&M Commerce and wants to become a psychologist. Lauren is a part of the local CF chapters in Dallas. She has participated in research studies, such as the one
for Trikafta®. You can check out her blog where she talks about her experiences with CF as a Black girl called Justtryingtobreathe.com. You can also follow her
on Instagram @loveleezus.
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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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