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.
Before my double lung transplant, I experienced major body aches and poor posture due to my cystic fibrosis. Here are some of the ways I found to help combat this and ease some of my pain.
September 21, 2017
Why Being a Mom of 2 Kids With CF Sometimes Means Watching Your Attitude
My Most Embarrassing Mucus Moment
Before I received my double lung transplant, I was in a field of pain and agony related to my cystic fibrosis. Coughing attacks, being hunched over
for extended periods of time, hospital beds, stress, not being able to walk but a few feet, and feeling awful the majority of the time had a huge impact on my body in the form of pain, body aches, and poor posture. I experienced major neck, shoulder,
and back pain because of my progressing disease.
In order to relieve my pain and correct my posture, I had to find things that helped me personally. I have always been the type of person who will try anything once to relieve unnecessary pain, so I've been able to find a few things that seemed to help
me breathe a little easier when it wasn't so easy.
The first method I found was massage, which helped me tremendously. Not only were massages an hour to an hour and a half of pampering, but they also allowed my aching body to find a sense of relief. The massage therapist helped by getting out the knots
that could build up in my problem areas from coughing so much, hunching over from coughing as a defense mechanism, and stress. By getting these knots worked out, I felt as though I was able to breathe easier due to less pain and increased movement
where my lungs and airways are. For me, massages helped me relax my mind as well. I found myself getting anxious when my lung function was dropping to ultimate lows, and massages gave me a place to ease my mind and let myself go to a place of rest and relaxation.
Another way I helped my posture and aches was using a foam roller.
The foam roller is an amazing tool for me. After being in a hospital bed all the time and coughing so much, I felt the need to stretch out my back and body. It is obvious that being bedridden
in the hospital and the stress associated with this can cause tension. So, I used the foam roller to stretch out the problem areas, which were mainly my back. By rolling it on top of my back, it really stretches the muscles and helps to open up my
airways more. I found that it helped me in similar ways as getting a massage because it corrected my “hunched-over effect” that I would get when coughing. For me, hunching over served as a defense mechanism to protect my lungs and chest cavity when coughing so hard. By using the foam roller, I found that it helped me significantly, and my posture and aches were much better than before.
Lastly, I love using a yoga ball to sit on. I found that this helped when doing my breathing treatments and when sitting around. By using the yoga ball, I was forced
to sit upright and keep my spine straight, thereby correcting the hunched-over effect that many of us tend to have. This allowed my airways to be fully open and gave me maximum expansion of my chest cavity, which made my breathing a little easier.
Even though I had my transplant, I have still adopted these strategies into my “new” life. I still get massages, use the foam roller to stretch out, and use the yoga ball to help with my posture. These all have been such great additions in my life for
both my body and my mind. We all need to relax and find a sense of relief from the pain that CF tends to force on us, and finding these tools have helped my life with this disease in such a positive way.
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.
Adult with CF
Tiffany was diagnosed with cystic fibrosis at birth in 1989. She received a double-lung transplant in November 2016, and has since been recovering and enjoying her second chance at life. A California native, Tiffany enjoys makeup, anything Disney-related, Taylor Swift, and helping the CF community through her YouTube channel LUNGS4TIFF and joint Instagram account @SaltyCysters. Tiffany credits her amazing support system for helping her maintain a positive attitude throughout her struggles with CF, and is very grateful for the life she lives.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails