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 it comes to lung function, I like to remind myself that the numbers aren't everything. Although my numbers may be “low,” they do not define my ability to live a full, happy life.
November 30, 2017
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When I was diagnosed with cystic fibrosis at the age of 8, I had practically been symptom-free -- with the exception of the gastrointestinal (GI) symptoms
caused by CF without taking enzymes and a reappearing rash -- which the doctors chalked up to bug bites or several
different food and drink allergies.
My mom is the reason I received a confirmed diagnosis of CF. After searching through her nursing books, she found a photo of the rash that I had been experiencing multiple times a year, and under the picture were the words “See CF.” My mom then demanded
a sweat test from my pediatrician. As you can guess, the results came back positive.
Despite having a very healthy and active childhood, as soon as the teenage years hit I began to have a pretty tough time, experiencing my first PICC line at the age of 13 and CF exacerbations about every three months. Even though I had a nurse as a mother and was 110 percent compliant with my treatment and therapies,
I still lost about 60 percent lung function over 15 years.
Fast forward to now. I am 28 years old and have a low enough lung function that I “should,” from outside standards, be eligible for a double lung transplant.
And yet, I've been worked up for a transplant multiple times over the past five years, and each time was told that I am functioning at a much higher level than a “typical CF patient” with similar low lung function. In other words, I am functioning
at a level that's too healthy for a lung transplant, and yet my numbers are saying that I'm there. Each day, I am living in the unknowns.
I have been working full-time since 2013 and, thankfully, am continuing to do so. I work in patient education and absolutely love my job. Last year, I completed my MBA -- a goal that I slowly worked to achieve over a three-year period in addition to my
full-time position. My husband and I love to travel, and try to take multiple vacations during the year.
Despite what the numbers say, I am living a full life.
Living in the unknowns has taught me to appreciate family and friends, and has made me look at life differently. It's made me realize that I am physically doing ALL that I can to keep myself healthy. It's telling me that waking up at 5:30 a.m. every day
before work -- to complete my treatments, vest, and exercise routine -- has not been in vain, and that I'm doing everything I can to keep myself off the transplant
list for as long as possible. It's given me continued hope that when the Cystic Fibrosis Foundation finds new medications and, eventually, a cure, my lungs will be healthy enough to hopefully reap the benefits from it.
In an odd way, I like living with these unknowns. Because for me, the unknown also means possibility. There is a possibility that I will continue to function despite having low lung function, and continue working full-time for many years to come.
As my doctor says, “the numbers aren't everything.” And so, I do not let them dictate my life. Do I have limitations? Of course I have limitations. I cannot do everything a “normal” person can do. BUT, I can still have a completely full, happy life despite
having low lung function.
While I breathe, I hope.
Adult with CF
Meagan was diagnosed with cystic fibrosis at 8 years old. She has been volunteering and fundraising for the Cystic Fibrosis Foundation’s Great Strides event since the early 2000s, as well as for CF Cycle for Life since 2015. She spends her days working in patient education at her local hospital, and is heavily involved in her care center’s CF patient advisory group. Her hobbies include traveling, photography, the beach, and spending time with her family and husband, Justin.
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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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