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.
Cystic fibrosis has brought countless treatments, hospitalizations, and hardships, leaving me with an overwhelming amount of emotions. When I found painting, not only did I find a new hobby, but I learned a way to escape by turning my emotions into artwork.
September 18, 2018
Demystifying the Colonoscopy
Remembering Claire Wineland
I never thought that Pinterest could change my life, but after trying out a couple of art projects, I learned painting was a ton of fun and a great release especially when I was going through hard times with CF. After a project caught my eye, I picked
up some acrylic paint and a cheap set of brushes and decided to give painting a try. I couldn't tell you what that project was now, but what I do remember is falling in love with the relaxing feeling that painting gave me.
After my very first venture into artwork, I started exploring other projects from painting rocks for my flower bed to painting a portrait of my best friend's dog for his birthday. Although I wasn't sure if I could pull the portrait off, I was surprised
at how easy it was for me!
Soon friends and family began requesting paintings, and I started donating pieces to charity. It lifts my spirits knowing that something I created can bring happiness to others and help them through difficult times. Because of CF, I am unable to work,
so I've also found that being able to create artwork gives me a sense of purpose and structure that I realized was a piece that I was missing dearly from my life.
Although painting started out as a hobby, it has also become my escape. When I'm sitting at my easel, paintbrush in hand with music blasting, I don't think about PFTs and treatments or wonder when I could be hospitalized again. Art is my therapy. I've
painted through bouts of depression, severe pain, and the loss of my brother to CF. When I need to get the darkness out of my mind and heart, I
turn to painting and put all my emotions on the canvas. My favorite part about painting is being able to look back on those dark pieces and remind myself that things
are better now or realize that I can get through whatever difficulty is happening.
I encourage anyone with a creative itch to give some form of artwork a try. Whether it's painting, writing, or cooking -- it doesn't matter. Any activity that calms you and allows you to escape reality for a while is worth exploring.
Because I found so much joy through painting, I love to help other people find their creativity in painting as well. I'm excited that this year I'll be teaching painting during BreatheCon. If you're an adult with CF and interested in exploring painting, whether you're a beginner or experienced, I hope to see you there!
Just like me, you'll never know what your new favorite hobby could be until you give it a go.
Join the conversation on Facebook.
Adult with CF
Jessi is 37 years old with CF. She works with Khloe's Hope, a foundation dedicated to bringing art supplies to children at Seattle Children's Hospital and Marry Bridge Children's Hospital as well as helping CF families with expenses not covered by insurance. Jessi lives in Lake Stevens, Wash. with her two best friends and her wonderful dog, Cosmo. Visit her Facebook page to see her artwork.
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