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.
On my first international trip, I found myself in an interrogation room explaining my port to security officers.
July 30, 2018
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My first international trip was to London in 2014. It was for work and would act as my barometer to gauge if I could handle additional international travel. Overall, the trip went well, with only minor hiccups, and I concluded that I could handle it more
frequently. The final test was to pass through security, board the plane, and trust Delta to get me home.
London's Heathrow Airport is massive, clean, and displayed a level of technology I had never seen in an airport. It has since become more common, but this was the first place I saw levels of automation in the airport security process. It was impressive.
As I approached the front of the security line, I prepared to disassemble my baggage and clothing like I do when going through every other airport security check. I took note of the passengers in front of me and how they methodically complied with the
system Heathrow had established. As a foreigner not wanting to draw attention to myself, I followed the rules and tried to act like a pro.
Along with every other personal item security requires you to display on the belt, I pulled out my nebulizer. I've been traveling with a nebulizer since my first family skiing trip when I was eight. Nebulizers were quite new at that time and raised a
lot of questions. That was 20 years ago and CPAP (constant positive airway pressure) devices and nebulizers are much more common. I rarely got a second look from security during domestic flights. “Let's see how Heathrow handles this,” I thought.
As I feared, back to 1993 we went. My nebulizer was pulled to the side for further evaluation as I entered the body scanner. The body scanner alerted the officers to something on me but that wasn't my concern. I didn't take my eyes off my nebulizer. I
was not going to allow it to get lost in the shuffle. I watched while unaware of the security officers patting me down.
I felt hands on my chest and heard the security officer in thickly accented British English ask, “What's this?” with a hand on my port.
I was a little annoyed because I was now encountering another delay before reuniting with my nebulizer. I tried to explain what a port does -- but must have done a poor job -- because he radioed for a supervisor. By this time, my head spun in different
directions, and I was no longer sure what to be more concerned with -- the whereabouts of my nebulizer or the issue with my port.
I was told to follow another officer. By the time we reached the end of the belt, my nebulizer had already been swabbed for uranium (I assume that's what they swab for) and cleared of all wrongdoing, and the officer allowed me to retrieve it. My problem
with security wasn't what I anticipated.
The officer led me to a small room with a small table and two (you guessed it) small chairs. I was confused as I looked around. Soon, two more officers enter, which put the room at capacity.
It was an intimidating situation, to say the least. I, again, tried to explain what my port was, but I could tell the explanation wasn't landing. Still struggling to convince them it wasn't a button to a doomsday device, I offered to take my shirt off.
They looked at each other as if they were having a telepathic conversation that I think I overheard: “Can we allow that? Is this a trick?” One officer agreed as long as I was comfortable doing so.
“Whatever gets me out of this room,” I thought. I showed and explained my port and greatly enjoyed the looks on their faces. I felt like part zoo attraction and part science project. It was comical to see their demeanor change. They started rough and
tough and ended thinking my port was cool and wishing me good luck and good health as I left the smallest room in the world.
This is an example of what it's like to travel overseas with cystic fibrosis and how one event, which only lasted about 15 minutes, can contain almost every emotion. It taught me that I can handle international travel. My best advice is to plan and prepare
wisely. But, most importantly, plan to be flexible. The trip won't be 100 percent perfect and adaptation is key to enjoyment.
Adult with CF
Clay was diagnosed with cystic fibrosis at 3 years old. An active lifestyle has promoted high quality of life. Clay graduated from the University of Central Missouri in 2007 with a bachelor’s degree in accounting and earned an MBA from Washington University in 2018. He is the director of operations for Coastal Business Supplies, which distributes personalized promotional products. Clay is inactive with social media -- the best place to contact him is at firstname.lastname@example.org.
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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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