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.
Despite my cystic fibrosis, my relationship with my daughter continues to grow stronger each time we are together. She doesn't care about what I can or can't do physically. She just loves me unconditionally.
June 29, 2021
Advocating Alongside My Sister With CF
Risk Assessment in an Ever-Changing World
According to the Merriam-Webster dictionary, a date can be a noun or a verb. Many of us use the word as a verb -- “Disco, that word dates me.” I prefer using it as a noun -- “the day of the month or year as specified by a number.” That definition of date
applies meaning, substance, and relevance to life-changing events in one's life. The most important date in my life, with positive meaning, is the birthday of my daughter (my life, my light), December 22 or 1222.
What other dates have profound meaning? My birthday. My brother's birthday. My niece's birthday. There are countless others, but the day I discovered -- or was told -- I had cystic fibrosis had a tremendous emotional impact on me. Besides ending a two-year
medical trek to discover what was medically wrong with me, the date also represents the day my marriage ended. While the medical trek ended, an odyssey began on a different front. I had to fight in court to be a present parent in my daughter's life.
The odyssey was fueled by ignorance and narcissism. However, that is a story for another blog post.
Needless to say, many years later and a win in court, my bond and relationship with my daughter are growing stronger by the day.
What is it like to be a single parent with CF, over 50, raising a 7-year-old? Every date means something when I am with her. We have daddy/daughter vacations, daddy/daughter photo shoots, and a plethora of daddy/daughter fun times. Since I started to
take her to pre-K, we have taken photos every day we are together. She will have a true digital diary of every day she has been with her dad.
Every date matters in the life of a father with CF.
When we go on daddy/daughter trips, does CF affect what I can do with my daughter? Yes, yes it does. But like most individuals with a handicap, one adapts and relearns one's limitations. Will I be running marathons or entering strongman competitions?
No. However, I might walk with my daughter and our dog, Ruby, by the lake; or ride my electric bike while my daughter rides hers with both of us wearing our two-way communication
Does my daughter know her daddy is sick? First, let me state that “sick” has several meanings. I do not view myself as sick. One is not sick -- just temporally not 100 percent. Let's be honest -- no one is 100 percent. Today, I feel like 100
percent. Why? Because no matter what I can or cannot do physically, my daughter loves her dad who has CF, unconditionally. She does not see CF; she sees her dad. Whether it be on the sidelines, in the carpool line, on her phone, or in a photo, the
love of a child has no expiration date. There is no maturity date. Just one great date after another.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Andy studied computer science, statistics and political science at Georgia State University. Beginning in 1989, Andy worked in the broadcasting industry for 20 years, including at Turner Broadcasting and The Weather Channel. He was diagnosed with CF while
working as director of global application development and innovation at UPS. Andy’s focus now is being the best father he can be for his daughter (Daddy’s Girl), and writing about his lifelong journey with CF, although he did not know he had it. He
is always looking for opportunities to bring more awareness to the CF community and those involved in it -- family members, friends, and people he meets.
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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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