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.
As a black man with cystic fibrosis, I am in a minority group within a minority group. I waited my whole life to find someone I could easily relate to until I happened upon a Facebook group for post-transplant patients.
Kadeem D’Shai Morgan
June 26, 2020
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Having cystic fibrosis forces you into a niche demographic -- a demographic that is so unified, but so far apart from one another. Those diagnosed with CF are forbidden to engage in any physical contact with other CF patients. This is to help prevent the spread of each individual's highly contagious and possibly fatal infections and viruses. Because of this, growing up I never met anyone else who had CF. I knew people existed around the world maybe, but no one I was able to start a Skype call with or share stories with over the phone.
No one looked like me. Every single person I have come across who had CF was white (Caucasian European); no one was of African heritage.
Even to this day, my brother and I are considered needles in a haystack. Being forced into an even more niche demographic only helped fuel my feelings of loneliness and isolation. Growing up and living with cystic fibrosis was a struggle. My childhood turned me into a pathological liar. I had to lie to my closest friends and extended family as to why I couldn't attend some family gatherings or why I was absent from school for weeks at a time. I also attended an elementary school where the main population was white.
I grew up as everyone's token black friend. There was a certain standard I had to uphold to avoid stereotypes, avoid petty sympathizers, avoid labels, and most of all avoid being outcast.
I just wanted to be a normal kid who was able to live life not worrying about being able to breathe, not worrying about my daily calorie intake, and not worrying about getting sick from the slightest change in weather. I wanted to be like everyone else around me -- healthy. This is how I felt for the entirety of my elementary school years, as life was to get only more complicated during my four years of high school.
High school was not as hard as elementary school, but it did offer its own unique set of struggles. Teenagers are so judgmental when they notice someone different. Everyone in their teens tries to ascribe themselves to a certain group that is either well recognized or popular. I loved music, so I joined the school's senior concert band, jazz ensemble, and the school choir. I also took every music class (besides the keyboard), as well as a dramatic arts class for the full four years.
By grade 10, my health started to rapidly decline as I had a constant and persistent cough that was hard to contain. Long dramatic performances started to become very daunting as sometimes I'd need to pose like a statue for a lengthy bit of time. This was hard because I would then have to hold in my cough. Holding in a cough with no water in sight is the most uncomfortable feeling ever.
Eventually, I had to scale down my music extracurriculars simply because my lungs couldn't handle the heavy demand of playing the saxophone or singing a note for a full two bars of music. I would just have to cough so often and for a long time without the aid of water. Surprisingly, I cannot recall anyone ever questioning me about my health during high school. If anything, my closest friends just joked around about it and that didn't bother me one bit because I still felt I belonged to the friend group. I felt more wanted in high school than I ever had in elementary school. Some people looked like me, dressed like me, and talked and walked like me. But the bitter fact still remained: I was not healthy like my peers, and I still felt alone thinking I was the only one in the world with cystic fibrosis.
After high school was over, as I made the transition from pediatric CF care to adult CF care, my health had only gotten worse. Ages 17 to 20 were my years of denial and extreme ignorance. I knew college was going to be a whole new ballgame, uncharted territory. I felt more welcomed than I had in high school because I found people who looked like me, but again with my luck, no one to fully relate to. I was only able to complete one year of college due to my rapidly declining health. Spring 2017 is when I finally gained the courage and went through the whole transplant process with astonishing success.
Two months after my surgery, I had a set of tests and a clinic appointment. In the waiting room for the pulmonary function test (PFT) labs where the technicians see how well your lungs are functioning, I had overheard a small group of post-lung transplant patients talking about a Facebook group that catered to the transplant program at Toronto General Hospital. Upon my acceptance to the group, I was finally able to find people who lived the same life I had been living from birth. This Facebook page was the gift that I've been wishing for a very long time. This was my CF/transplant family.
From being a black youth to becoming a black man growing up in a predominately white environment, I had and still have to hold myself to a certain standard to avoid discrimination and any other acts of inequality.
Having CF while living in such a climate allowed me to view life as a whole from a very special point of view. CF is me, but CF does not define who I am. I am a strong black man, but I'm also a human being like everyone else.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Kadeem D’Shai Morgan
Adult with CF
Kadeem was diagnosed with cystic fibrosis when he was 1 year old. Music has kept his spirits strong for 20 years. The love for artistic creation and performance was his getaway from reality. School band ensembles, jazz quartets, African dance accompanied
by Djembe drums, and the love for DJing kept his soul strong when going to battle with CF symptoms and illnesses. After three months of hospitalization three years ago, he was given a new lease on life: He was gifted donor lungs. Kadeem was able to
breathe freely for the first time. He was finally able to start living the life he was meant to pursue. Kadeem aspires to be a music therapist, youth and child social worker, and youth counselor.
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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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