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.
When I was young, I didn't think much about having cystic fibrosis. Over time, I realized how big of an influence it has on my life.
October 9, 2017
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When I was young, having cystic fibrosis didn't really seem like a big deal to me. I had to take some pills when I ate
to digest fat, and I went to the doctor more often than the other kids. I didn't know anything outside of my own experience. When
I did a report on CF in elementary school, reading about it seemed entirely foreign. Sure, I had some of the symptoms they talked about, but I was living a normal life. I couldn't possibly have the typical version of this disease.
I must be the exception.
Fast forward to junior high. I picked up an unusual and nasty bacterial infection. It does damage. I'm at a cast party after running the spotlight at the
high school musical and I cough. It feels different. I look at my hand and its dripping in bright red blood.
Not good. In movies that's usually a pretty solid bet that you're about to die.
Maybe I'm not the exception?
Aggressive treatment. A year on three powerful antibiotics -- one, used to treat leprosy, has the side effect of making my skin tan. I'm my sickest, yet I
look good. It's peculiar. I have a series of bronchial embolizations where they implant stainless steel coils in the damaged blood vessels in my lungs.
The internet is in its infancy, so I look up CF in books. I learn most men who have CF are sterile. I look up sterile, and I learn that I can't have kids.
Seems too far away to worry about, plus I'm the exception right?
I go to college (go Jumbos!). I make great friends. I learn to manage my health on my own. I'm not as good at it as
when I had my parents supporting me, but at least there's beer. My ping pong game improves.
The internet is all grown up and full of information. I read about CF and I learn that new treatments are enabling men with CF to father children in some cases. Amazing. Still feels far away, I'm not even dating anyone. Also I'm immune to cholera. Neat.
I go to law school. Make more great friends. Move in with my brother. My foosball game improves. I pass the bar, get a job for the government, and move to New York City.
I don't really talk about CF with anyone. I've learned that the label scares people. Even with medical advancements, I'm still inching closer to those looming "life expectancy" numbers, and I don't want people's pity. Plus, why worry them? I'm a fully
functioning adult. I can handle it. Nobody needs to know, right?
I meet Kathy. I fall in love. We get married. My ping pong and foosball games fall apart. I start participating in clinical drug trials. Mixed results. More bleeding,
more embolizations. Yearly home intravenous antibiotics. But, science is starting to take bigger steps forward in treating the disease.
I start talking more openly about CF. It doesn't have the stigma I used to think it did. Kathy and I decide we want to have children. We know we need to do in-vitro fertilization since most men with CF produce sperm that can't get out. I have an unpleasant surgery and we hope for the best -- I don't want to be the exception. Success. Kathy has a whole series of
unpleasant procedures, but they work. We have a beautiful, healthy baby boy named Max. He's a gift.
Recently, some promising clinical trial results were reported on, drugs for hard-to-treat heterozygotes like me. Participants saw about a 10 percent increase in lung function. Remarkable. I will enroll in a trial in early 2018. I hope when Max is old enough to look up CF, he reads about a disease that used to affect people. I hope the story is no longer one of people with CF fighting to breathe, but a success story of science and human perseverance.
Now that would be exceptional.
Adult with CF
Jeff was diagnosed with cystic fibrosis at 18 months. He credits his health to his wonderfully supportive family and friends and outstanding medical team. Jeff received a B.A. from Tufts University, J.D. from the Boston University School of Law, and has been a practicing attorney for the New York City government for the last decade. He lives in Brooklyn, NY, with his wife Kathy, 5-month-old son Max, and goldendoodle Leo.
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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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