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.
COVID-19 presented all of us with a great deal of uncertainty. Fortunately, several sessions at the North American Cystic Fibrosis Conference helped provide some data -- and some relief.
Adriane De Moerloose
December 22, 2020
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I am a cystic fibrosis mama. I am well-trained in being able to differentiate Drew's coughs, and have the superhuman ability to hear a cough over a mile away. After having a child with CF, protective motherly instincts I never knew existed took over,
and I learned how to live in a world full of germs and bacteria that are designed to hurt my child.
Every cold and flu season, I have become accustomed to living with a constant lump in my throat every time my son goes to a friend's house, goes to school, or participates in an activity. I've seen him at his best and worst with this disease. His still-visible
PICC (peripherally inserted central catheter) line scars support every decision I make for him whether it's keeping him home from school when
the flu hits his class or canceling a playdate because of another child's runny nose or cough.
The COVID-19 pandemic has been the worst nightmare of every person with CF and parent of a child with CF.
As the country shut down, my anxiety level went into overdrive. I felt like I had a newborn with CF again. How would he handle COVID-19 if
he got it? How are we supposed to live in a world that isn't designed to protect the most vulnerable? How would this impact my child without CF if we had to stay in lock-down longer for the sake of her brother's health?
I was eager for weeks to pass so we could learn more about how COVID-19 was impacting the different populations around the world, but especially the CF population.
As social media and well-respected medical professionals and health organizations bombarded us with a plethora of varying opinions and information, I found myself wanting to seek out others' thoughts and opinions on these topics. I quickly learned that
was an unwise decision for me. A month into the pandemic, I made a decision to only follow the medical advice and information from my child's CF care team, as well as medical professionals on CF Foundation-hosted
Turns out, the information I learned from my son's care team and the other medical professionals was accurate every step of the way. From how the virus acted within the body to the antiviral medication Remdesivir, the information was truthful, well thought
out, and gave me the peace I needed.
The sessions at this year's North American Cystic Fibrosis Conference on COVID-19 were up-to-date, well-done, data-driven pieces. There were no political undertones or rhetoric within the data and that suits me just fine. Politics has no place in medicine.
I'm only interested in hearing from medical professionals who have the expertise and confidence when it comes to treating this virus. That's exactly what I found during those sessions, and I appreciate every person who spoke on this topic.
Medical professionals from the U.S. and other countries gave an excellent, comprehensive overview of populations most affected by the virus, including the percentage of complications that arose within those populations, and a detailed understanding of
the incubation period of COVID-19 once it enters the body. I appreciated learning specific complications that arose in people without CF, including detailed laboratory abnormalities and X-ray findings. These discoveries helped me educate my relatives
who do not have CF but are also at risk.
Children always seem more susceptible to every virus, so learning the majority who got COVID-19 experienced milder symptoms than adults was eye-opening. I appreciated the citations from pediatric medical journals so if I wanted to read more, I could find
them easily. The most fascinating data I learned involved the results of how COVID-19 affected people with CF. Up-to-date, worldwide data was provided along with age demographics, complications, and the percentage of people on CF modulators.
There were several conclusions made as to the possibility of why people with CF are faring well with this virus. The CF population and their families are well-trained in social distancing and hand hygiene. There are also findings that specific proteins
within the body and medications like azythromycin can reduce viral entry. This is information I plan to follow up on with my son's CF care team so I can continue educating myself about this virus and how it differs from other viruses.
With this knowledge, I have been able to make the best decisions for my son and our entire family when it came to how we would re-enter society and learn to live with COVID-19 among us. This came with some challenges as it's hard to navigate a world where
so many people don't abide by the same precautions or share the same opinions.
Everyone interprets and processes information differently and medical information is no exception, especially because most people have never had to think about a virus the way a person with CF and their family think about viruses. I overhear people talk
and read social media posts that aren't even close to being medically correct and I just keep scrolling.
Between COVID-19 and the presidential election, I've been content staying off most social media. We continue to do our best, and my children are happily adjusting to this new way of living for the time being. I am grateful the CF Foundation shares the
knowledge from experts from around the world, which allows us to receive accurate information, so we can continue making smart decisions for our families.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adriane De Moerloose
Mother of a child with CF
Adriane is a mother to two children, including her son, Drew, who was born with cystic fibrosis. She has a bachelor’s degree in English and a master’s degree in education. Adriane is the chair of the CF Parent Advisory Board at Nemours/AIfred I. duPont Hospital for Children, a board member for the CF Community Blog Editorial Board, president of her neighborhood homeowner’s association, and a board member for her son’s elementary home and school association. Adriane and her family reside in Pennsylvania.
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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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