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.
A few years ago, CF started to take its toll on me. I kept getting sick, going on and off IVs, going in and out of the hospital. But through it all, I found a silver lining.
August 3, 2015
New Ideas Energize Scientists at CF Research Conference
Searching for a Cure: Clinical Trials and the Therapeutics Development Network
I turned 47 the other day. Forty seven! Never in my wildest dreams did I think I would ever be this old. I knew I would make 20. I thought I might possibly make 30. I didn't think I had a chance for 40, and now I'm approaching 50. Fifty!?
Over the years, as I read and learned more about CF, I watched the average life span rise and rise. When I was born, in 1968, the median survival age was 16. For many, many years I straddled the median as it increased. Of course, no one ever made dire predictions to my face, but there was always a number looming in my head. I figured it would catch me someday. Today the median age of survival is in the early 40s, and a good friend of mine told me recently, “You are way past that now!” And now I realize the median age is just a CF statistic and does not mean anything about me, which is great.
I'm a member of numerous CF Facebook groups, and I love it when someone writes, “I am 16,” or 24, 28, 52, “and I am kicking CF's butt!” Every time I read those messages, I get this charge, this feeling of support, this energy to keep on fighting.
To me, fighting means doing all of my treatments, taking all of my meds and doing my vest. It isn't always easy, and some days are much harder than others. But when I see that other CFers out there fighting, too, it helps motivate me to do the same.
However, CF is a progressive disease. We all remember friends who lost their fight. And especially as I age, there are many days when CF kicks my butt.
A few years ago, CF started to take its toll on me. I kept getting sick, going on and off IVs, going in and out of the hospital. I could not get a break. Every time I thought I was pulling out of a spate of illness, something new or worse would pop up. I felt defeated and depressed. No matter what I did I kept getting sick. I asked myself if it was the beginning of the end.
Everything came to a head about a year ago, when I developed terrible pneumonia in both my lungs. I was intubated and in the ICU for 2 weeks. I don't really remember much of that time, but I was lucky enough to wake up and get another chance.
Coming back from that bout of illness was not easy. I had to make a choice to change some of my expectations about my life.
I had to let go of things I wanted. My life changed in ways I did not know or expect. I had a lot less energy. I walked much slower than my friends.
Was I happy about all that? No way! But as my friends kept telling me, it was lemonade time! Life gave me lemons. What else was I going to do?
First, I had to stop working. I had been a high school teacher for many years, and I loved it. It was heartbreaking for me to walk away, but I knew I needed to put my health first. Continuing to work would do irreparable harm. I had seen too many of my friends continue to work until it was too late.
Second, I got to know my CF care team better than ever before. Let's be honest, we all know our doctors, nurses, social workers, and other health professionals very well. But I was more honest and compliant than I had been before. I made sure to tell them when I was tired or down. I pushed myself more when they suggested more treatments, even though going from twice a day to three times a day was tough. And we talked about it. I worked on the lines of communication. I was used to listening to my docs, taking what they said "under advisement," and then doing what I wanted. I started really following directions.
But as days grew into weeks, I found I had a little too much time on my hands. I had stopped working, and I was getting bored. I had become a professional patient. I realized that if I was going to make it I had to find some meaning, some activity to occupy my time. If all I did was take care of my CF and only do treatments, clean my nebs and see doctors, I was going to lose my mind.
So one day I asked my CF doc if she needed any help around the clinic or if she knew of any volunteer opportunities I could take part in. From that small question, a door opened. She asked me to join a Quality Improvement Initiative Committee, then a clinical trial and then another committee. Once I was healthy enough, she suggested Pulmonary Rehab. Meaning and purpose starting coming back into my life. Suddenly I was busy. Days were turning into weeks and then months.
All these activities did not take away from the fact that my CF had progressed and that I need to take better care of myself. But they did give me a new purpose and drive in life. My life was not over, but a new and very different chapter had begun.
Adult with CF
Rich was diagnosed with cystic fibrosis in 1969 when he was 6 months old. He also had an older sister with CF. Rich is a tough fighter who resides in New York City, and looks forward to many more years fighting CF.
May 2019 -- We were deeply saddened to learn of Rich's passing. Rich opened his heart to the CF community through our blog. He will be missed by many.
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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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