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.
Living with cystic fibrosis is a constant reminder of the things that have been taken from me. I feel like I've made a bargain with the devil, so to speak.
July 6, 2016
Kicking and Screaming: Dealing With CF and Anger
Unequal Time: Lessons From Growing Up With Siblings With CF
There are certain things that cystic fibrosis can take from me, but in trade, there are certain things that I will not give to CF.
CF can have my time. CF will, without a doubt, take my time. It takes it every morning -- when I get up at 5:15 a.m. -- to do
before I go to work. It takes my time when I infuse antibiotics and
check my blood sugar
five times a day. Or to go to the hospital and doctor's appointments. And it will take time away from me when I prepare weekly medications and order prescriptions every month.
CF cannot have my memories. The time that I do have that is not controlled by CF is always put to good use. These moments have translated into the best times of my life. This includes showing horses with my dad every weekend as a child and young adult; seeing the Eiffel Tower, the Roman Colosseum, Westminster Abbey and the Golden Gate Bridge; and making trouble and sharing good times with close friends. Those memories I will keep, and I will not let CF have them.
CF can have my embarrassment. For anyone who has CF or is closely linked to someone who does, it's no secret that CF can sometimes be less than attractive. CF can have my embarrassment when I have a
that starts before I can cover my mouth. CF can have my embarrassment when I overhear strangers say I sound like I belong in a TB ward. CF can have my embarrassment when I hear people ask, "How long have you had that cold?" And CF can also have my embarrassment when I feel the stares from people who see my
attached to me at the grocery store.
CF cannot have my dignity and my pride. CF cannot have my dignity; the feeling that makes me carry myself in a manner that shows self-respect and confidence for living with such a harsh disease. CF cannot take from me the pride that I feel every day I overcome my obstacles and the pride of the achievements that I have earned both personally and professionally. CF cannot have the dignity that prevents me from complaining about my circumstances, playing the victim or making excuses when I fail. CF cannot have the pride that I feel as I
earn my master's degree
while working full time.
CF can have my fear and disappointment. As I get older, I've started to transition from an "I'll just wing it" mentality to one that makes me play things on the safe side. I recently sold my first house to downsize and to find something that requires less yard maintenance. CF can have the fear that prevents me from buying a house right now because I am worried about what will happen in 5 to 10 years when I can't work. CF can have my disappointment when certain drugs don't help me as much as I would have hoped, and CF can have my fear about the uncertainty that I face with my health and how I will take care of myself as I get older.
CF cannot have the love and support of my family and friends. CF cannot take the love and support of my family and friends who have helped me deal with the fears that I experience: whether it is through their constant encouragement or kind gestures, like my parents picking up a prescription for me when I am worn out at the end of a workweek. CF can't take away the encouragement of my friends when they show up every year at
to walk with me. And it can't take the support of my parents, who have instilled in me a work ethic that makes doing treatments a priority.
Most important -- CF can't have my hope that one day CF will be just a memory.
Adult with CF
Matthew was diagnosed with CF in 1988 at the age of 3, and later with CF-related diabetes (CFRD) at 14. Matthew works as a grants specialist for the Virginia Department of Health -- a job he is passionate about because of the health care aspect. Matthew earned his M.B.A. from Liberty University. Prior to this, Matthew earned his B.S. in management and organizational development and his A.A.S. in information and communication systems. In his spare time Matthew enjoys traveling and recently visited London, Paris and Rome. In 2014, Matthew went skydiving in Denver and climbed Silver Dollar Mountain.
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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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