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 parent of two young adults with cystic fibrosis, Peter knows the financial challenges and obstacles people with the disease face when trying to access quality, affordable care.
February 15, 2017
Taking Care of Yourself When Your Spouse Has CF
An Ode to My Boyfriend, Frank the Tank
When Peter Hodge's first daughter was born with cystic fibrosis, he had never heard of the disease -- let alone what to expect while raising a child with it.
“The world was a very different place,” Peter said. “There was very little public information about what CF was, and you didn't have the internet to learn about it, so I knew nothing about what she had.”
Eight years later, Peter's second daughter was diagnosed with CF.
“Think about the worst day you've ever had and multiply it by 100,” he said. “Then you're getting close to what that felt like.”
His daughters, now 24 and 16 respectively, are leading normal lives. His eldest daughter lives in a different state and has a good job. His youngest is attending high school in Florida but fights persistent lung infections. Managing their CF care comes at a steep price.
The medications, treatments and occasional hospital stays they require rack up more than $1 million in medical bills each year, Peter said. Luckily, he works for a company that offers a generous health insurance package that covers most of the cost, but with his daughters approaching an age where they can no longer stay on his plan, he worries about their ability to pay for care in the future.
“I'm not so worried about myself,” he said. “But I am worried about them ... Even with [insurance], I still feel the pressure, pain and cost of the disease.”
Peter credits his insurance as a major reason he's been able to help his daughters. But he also recognizes that if he didn't have insurance, his family would face impossible decisions about how to continue fighting their CF.
“A lot of people don't understand that living with CF is every day,” he said. “It's not once a week or once a month. Every day you have to deal with the disease. When you add in the fear of paying for drugs or getting access to the right doctor, it's an undue burden on what is already an undue disease.”
Peter says he is particularly worried about proposed changes to the Affordable Care Act (ACA), which extended insurance coverage to dependents up to age 26, eliminated lifetime coverage caps and prevented insurance companies from denying coverage for pre-existing conditions. All of these protections are critical to helping those with CF get the care they need, Peter said. He's concerned that if Congress were to remove these provisions, his daughters would struggle to find affordable and adequate health care coverage.
“[Health care reform] really gave everybody fighting this disease a safety net and a sense of 'We can deal with this,'” he said. “When you live with CF, you live with the possibility that things could get out of hand. It's such a vindictive disease, and if you give it a chance because you felt you couldn't afford a deductible on a medication, it will make you pay every single time.”
Congress needs to hear from you about the vital role adequate, affordable health care coverage plays in helping people with CF live longer, healthier lives. Send your member of Congress a message and ask them to ensure that the care and coverage needs of people with CF are protected.
Learn more about the Foundation's work to help ensure that any changes to health care reflect the unique needs of the CF community.
Former Public Policy and Advocacy Communications Manager, Cystic Fibrosis Foundation
Paydon previously worked at the CF Foundation as a Public Policy and Advocacy Communications Manager. Prior to joining the Foundation, Paydon spent three years working for Enroll America -- a national non-profit dedicated to helping consumers understand
and navigate the Affordable Care Act -- most recently as National Communicators Program Director. A Wisconsin native, Paydon is a competitive homebrewer, a fair-to-middling banjo player and an avid bicyclist. If you're curious, his father named him
after Paden, who is a character in the movie “Silverado.” Follow @Paydon on Twitter.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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