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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
My relationship with the idea of a lung transplant has changed over time. Although I'm approved for transplant now, it is a complicated process with a full range of emotions. Here's what I learned along the way.
March 27, 2019
Getting in Shape How CF Led Me to My Dream Job
Coping With Grief
Lung transplant. Two words people with cystic fibrosis often hear throughout their medical care. At first, it's this idea, one that's far in the distance, something overwhelmingly large that doesn't really pertain to you. At least, not at the time. I
couldn't relate when it was first mentioned to me, so I pushed it to the far corners of my mind, only revisiting the idea when I sympathized with my fellow CF warriors who were facing a transplant.
When I was told that I would definitely require a transplant in the future, I wasn't at a CF care center that best suited me so my first reaction
was to decline. I knew what this meant in the big picture and it devastated me, but I never wanted to put my family through a transplant I didn't believe in.
I moved to Southern California when I was 32 years old and was hospitalized shortly after with an exacerbation. During that admission, I met my current doctor, who -- without a doubt -- changed and saved my life. I had never had a CF doctor like her before, and not only did I feel like she truly cared, but I finally had a doctor who listened to me. She treated me like an individual, not just a CF statistic. For the first time in more than a decade, I trusted the doctor fighting this
battle with me, and the idea of getting a transplant one day became something that I absolutely wanted.
Cystic fibrosis is a progressive disease, and what I once couldn't relate to whatsoever -- lung transplant -- has now become the reality I face. My lungs are dying, and they are taking me along with them.
As I have gone through the transplant evaluation, there are things I want people to understand about what a transplant means. It
is an involved process, and there are no answers or decisions made right away.
The transplant evaluation is a process that involves days of back-to-back procedures, from blood draws to ultrasounds, and days of appointments meeting with the transplant surgeon to psychiatrists to dietitians, all discussing your case and preparing
it to be reviewed by the transplant committee -- the committee that decides if you are approved or not. Waiting for my results was mentally challenging, and I cried tears of joy and relief when I was told I was accepted.
I realized that once a person is listed for transplant, the call for new lungs could come at any time, so there are certain requirements that need to be met, such as staying within a four-hour distance of the transplant center and having the phone
on at all times.
From blood type to size, the new lungs have to be an absolute perfect match. You receive a lung allocation score to determine
where you are placed on the United Network for Organ Sharing (UNOS) waiting list. This score is usually a good indicator of how long you will wait until there is a match, which could be months or even years. Sadly, sometimes people don't live
long enough for their transplant to take place. Organ donation is based on a scoring system, and there is an ethical debate about whether this system is completely fair. To a person on the transplant waiting list who sees donor lungs given to
a seemingly healthier person, this can be a harsh reality.
It is difficult to determine when is the best time to list for transplant. It is a rollercoaster of emotions, and I've had to learn to hold on and go with the ride. The thought is, you need to be sick enough to need a transplant, yet strong enough
to survive it.
Life after transplant doesn't mean you no longer have CF, although you will not have hours of breathing
treatments. My CF medications will be replaced by a lifetime of immunosuppressants, which are vital to minimize the risk of organ rejection. I will have a new disease altogether, so to speak. Transplant gives the hope of many more years, but it
does not take away the disease.
While many transplant statistics and survival rates are promising and encouraging, it is still the biggest type of surgery with the most risks one could undergo. I'm sometimes at a loss for words when I'm congratulated for getting listed, as a broad
spectrum of emotions runs wild inside my mind. I am forever grateful for being approved and am optimistic for the day I get a new, healthy pair of lungs, but my road leading to that point is far from congratulatory.
For many years, my son has looked at me with a sparkle in his eye whenever he blows out a birthday candle or an eyelash from the palm of his hand. He smiles and says his only wish is for his mom to get new lungs. Every day I hope his wish comes true.
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Mother with CF
Lauren was diagnosed with cystic fibrosis at 2 weeks old. She loves adventuring with her family, traveling, music, writing, cooking, and has loved fashion since she was 2 years old. A former clothing designer, Lauren recently wrote and illustrated her
first book, which will be published soon. Born and raised in Las Vegas, Lauren now lives in Malibu, Calif., with her fiancé and two children, Luca and Ruby. You can follow Lauren on Instagram @ahippiesdaughter.
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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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