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.
Having cystic fibrosis as a Black man means being left out or misunderstood. I want to be heard, acknowledged, and represented.
July 13, 2020
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Being Black with cystic fibrosis means that because of this blog, I may experience backlash.
Being Black with cystic fibrosis means I feel different.
I remember when it started.
When I was a teenager, a TV show premiered featuring a Black person that had CF, and there was outrage in the CF community. They said that the show didn't represent what CF “really looked like.”
I remember thinking, but that's what I look like. Do I not have a right to be represented? Am I not good enough to be represented? What's the problem with being Black?
When I first tried to enroll in a clinical trial, I was told that I didn't qualify because one of my numbers for my liver came back too high. However, what I learned was that the numbers they say are “in range” are based on white males. My numbers were fine for being a Black male. Yet, I was still rejected.
Fast forward to the beginning of the George Floyd protests and my feed started to fill with prejudice, racism, and ignorance. Once again showing me, that I do not belong.
Being Black with cystic fibrosis means being misunderstood. It means being left out because approximately 5 percent of people with CF are Black. It means being an afterthought.
It means that when I go to the hospital, it isn't until my white mother shows up that I get treated equally. It means being denied proper medicine, attention, and treatment, until they realize that I'm half white. I'm 26 years old, and I still have to rely on my mother in a sense to make sure I'm taken care of. Not because I'm immature, or because I don't know how to take care of myself, but because of the effects of what it means to be Black with cystic fibrosis.
During this time, I personally don't have the answers for how to right any of these wrongs. However, I believe that many still don't know what it even means to be Black with cystic fibrosis. So, I write this to finally be heard, to be acknowledged, and hopefully to be understood.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Bobby is a content creator, a rapper/producer, and a certified life coach who was diagnosed with cystic fibrosis at birth. He graduated with a degree in creative writing from the University of Central Florida. Bobby is currently on a path to bring awareness and change through music. You can find Bobby on his website, Bobby Foster Speaks.
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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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