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.
I've lived my whole life like it has an early expiration date. Recently, a drug was FDA-approved that could change that. I'm grateful, but I'm also scared…
September 22, 2015
Letting Tomorrow Wait
When you have cystic fibrosis you spend your life waiting for the ball to drop on your health. You live life as best as you can: you go to college, you get a job in your field, you get married, you have a social life -- maybe even a child or two. And in between all that living, you fit in hospital stays, IV antibiotics and daily therapies.
But what happens when you are in your 30s, and you can no longer work because your health is too precarious? You have been evaluated for a double lung transplant (but deemed too healthy), and then you learn that Orkambi has been FDA-approved and could change all that?!
Well, for me, I was excited. Then I was scared. Then I was about a thousand other emotions rolled into one.
You may be wondering why I am scared and why I am not so totally overwhelmed with happiness that I can't think straight. You might also be thinking that I am ungrateful since I am not shouting from the rooftops. But I am grateful. I am also just scared of life, as crazy as that may sound.
I don't remember when I became fully aware of CF and its consequences. I always knew my life was going to be shorter, but I don't think I ever truly THOUGHT about it. Not until about 15 or so years ago anyway, when I was roughly 20 years old. I began to think about my life expectancy when my life was opening up before me.
I went to college and immediately after graduating I got a job in my field. I dated here and there and had my own apartment. But I lived day to day, and month to month.
I never made long-term goals because for me, “long term” was never going to happen. The future was very uncertain.
I had always assumed I would never see 40, and 60 was never even a blip on my radar. To be honest, I thought I would be dead by 26. But here I am at 34, still alive and kicking.
I lived my whole life expecting to die at any point. Knowing that my life had an early expiration date that was gaining momentum as I aged, I put aside thoughts of ever having to bury my parents or my husband. Aging, and all that accompanies it, was the last thing on my mind. I always assumed that I would never see my niece and nephews graduate high school or my step-kids get married. And I definitely never thought about saving for a “real” retirement when I worked.
Orkambi is now making me face the possibility of ALL of those things. I may get the chance to grow old with my husband. I may get to see my niece and nephews graduate and get married and have babies of their own. I may get to dance with my step-son at his wedding. I may get to experience all the things that the elderly experience -- the good and the bad, like burying your parents and friends. I may have to start saving for a retirement -- in my mid-thirties!
So why then does all that make me scared when it should make me ecstatic?
When I think of my possible future because of this drug, I find myself thinking of it in terms of a cancer diagnosis. Hang on, don't scoff at me yet. When a seemingly healthy individual is given a diagnosis of terminal cancer, their whole life is flipped upside down. There is no longer the possibility of a long-term future. They need to live life day to day and hope that they can make it to any milestone. The thing is, I already did live my life that way. I've lived with a life-shortening disease, and now it may no longer be life-shortening. I'm suddenly faced with a future of endless possibilities. Both scenarios are scary. Both will change your life and flip it upside down.
When I think of my life on Orkambi and the possibilities it opens up, I am scared. But I'm also very excited to “live” my life again. I can see myself as an old woman, and it's crazy. Maybe I will be able to sit on the porch on rocking chairs with my husband one day and watch our grandkids playing in the yard...and maybe, just maybe, I won't be so scared anymore.
Adult with CF
Amy was diagnosed with cystic fibrosis in 1987 at the age of 6. She lives outside of Boston with her husband and two stepchildren. Amy earned her B.S. in interior design and her M.A. in history and has a passion for both. Although unable to work, she concentrates on maintaining her health and expanding her crafting skills. She also has her own blog about life with CF, Mastering the Art of Breathing.
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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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