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.
Being born prematurely and facing a lifelong disease could have made me bitter and angry for my whole life. While there are some bad days mixed in, I have, instead, made it my goal to always be kind and considerate to the people in my life.
August 25, 2020
My Faith Gives Me the Strength to Cope With CF
Wearing a Mask is Not About You
In my 25 years, I have always looked at things like this: strive to make the world a more loving and positive place, treat others with kindness and empathy, and look at my cystic fibrosis as a blessing in disguise, not a curse. I know that this
is a very difficult and maybe upsetting stance to have, but there is a reason I think this way. I see that most people who are in their late teens, early 20s, and even 30s are self-centered and believe themselves to be indestructible. For me, though,
every action I take has consequences that could help me or harm me.
Do I take a drag of the cigarette offered by a friend? Do I skip my treatments because I feel fine? Do I take unnecessary risks because I want to do something my way and nobody else matters? No.
With all these thoughts swirling in my head, I have to think about what my actions could lead to. I have to consider all the people around me who have supported me all this time and how it would affect them, and I have to think about my future -- what,
within my limitations, do I want it to be like? To lay down the facts, I was born three months early, barely breathing and needing to be put on a respirator. I had to have surgery to fix my fused and tangled intestines that prevented me
from having my first bowel movement; that left a deep, permanent scar in my belly. I had a blood infection and I was on a pulse/oxygen monitor. Over the years, I also had to deal with the twists and turns my prematurity caused -- motor skill issues,
and having to do the routine care of percussors and albuterol treatments to help me grow and be healthy.
To many people, this is something that would bring them down a good amount; something that would maybe make them give up at an early age and just meander through life. For me, all that hardship and coming out healthy on the other side has strengthened
Any anger or bitterness I may have had at my lot in life has, instead, been transformed into empathy toward others and kindness and a driving determination to prove the statistics wrong and live a long and healthy life.
Are there difficult days? Yes. Am I the best at getting everything done that I need to do? No. Are there days where I just feel really run down and depressed because
of the complexities associated with this disease? Yes. Does cystic fibrosis control me? No. Am I stronger than my CF? Absolutely. And I vow to never give in to it and have it be my sole identity.
CF may be part of my life down to
the cellular level. But, I find deep in myself the desire to raise awareness and share my experiences about what the disease is like with others, which gives me that extra incentive to power through. The statistical data is not always right, so I
am continuing to fight harder and stronger to reach the goals I want and to live my life to its amazing fullest, just like everyone else.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Blake is a son and the eldest sibling of three younger brothers. He was born three months early and was diagnosed with CF at three months old. Blake works as a technology solutions technician for a local vocational school in Cincinnati. In his off time he enjoys watching NASCAR or IndyCar on TV, cheering on his hometown Cincinnati Reds, or creating content for his YouTube and Twitch channels. He has participated in Great Strides for roughly 22 years and has spread awareness of CF at local schools and nursing vocational programs. Blake’s favorite quote is by the late NASCAR driver Davey Allison, “I realized I better enjoy and appreciate and contribute as much as I can today because all of this could be gone tomorrow.”
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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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