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.
With a late diagnosis, I had every reason to feel hopeless and alone, but getting involved and connecting to others truly gives me hope for my future.
Autumn Dawson Mathis
October 24, 2018
Joining My Girlfriend on Her CF Journey
NACFC Session Examines the Importance of Partnerships in CF Care
I was diagnosed with cystic fibrosis when I was 32, and it has been quite a journey to get to where I am today. Regardless of the difficult path leading to my diagnosis, I have met some amazing people along the way who have encouraged me to fight against
this disease and who have shown me just how strong I am.
My parents gave me a childhood filled with friends, family, love, and fun. But along with those happy memories, I also have memories of constant GI issues, abdominal pain, bronchitis, pneumonia, and other complications.
As I got older, my symptoms continued to worsen. I developed frequent bouts of pancreatitis when I was 22 years old, which baffled my doctors. I was tested for just about everything, but my GI doctor never gave up on me or thought I was cuckoo when I
came to him describing my symptoms. He referred me to another specialist who initially suggested that I receive genetic testing for cystic fibrosis. But he later told me not to follow through with it because he was afraid having the test in my medical
records could endanger my health insurance eligibility in the future. It is extremely difficult knowing that if I had gotten tested then, I could have begun my CF journey much earlier. But I remained undiagnosed through my late 20s and struggled with
years of brief, but manageable chronic pancreatitis flare-ups and abdominal surgeries.
By my early 30s, I only got sicker and my symptoms worsened. My GI doctor admitted me to the hospital again for pancreatitis, determined to figure out the underlying cause of my years of pain. After the first week in the hospital, he ordered a genetic
pancreatitis panel -- the same test that I was told not take 10 years prior, and I anxiously awaited the results.
I received the results of the genetic testing in his office and finally had the resolution I so desperately wanted -- I was officially diagnosed with CF.
Something interesting happens when you finally get a diagnosis after being misdiagnosed your entire life. There's a swirling of emotions inside of you. You want to cry and rejoice at the same time. You feel devastated, but vindicated.
These feelings, of course, are immediately followed by periods of crying and depression. I'll be honest with you, I still get emotional talking about it. Then, something snapped. I became angry and felt determined to fight back against this disease
that had taken so much away from me.
A few weeks after my diagnosis, I was contacted by the Atlanta Chapter of the CF Foundation. They showed me the drug development pipeline and
explained the mission of the Foundation and their dedication to funding research, providing care, and supporting those with CF and their families. I had never heard of a foundation for any other disease that was doing so much innovative research for
a cure. They talked about Great Strides and other fundraising activities that happen throughout the year. I remember thinking, “If you say jump, I'll say how high!” I finally had hope and felt like I had found my way to fight back against this disease.
Since my initial meeting with the Atlanta Chapter, I have tried to get involved in as many Foundation events as I can. My Great Strides team, Autumn's Amblers, has been going
strong since the first year I was diagnosed, and this year I am proud to be one of the 2019 CF Fighters for Great Strides. I have even had the privilege of speaking at local fundraisers including Great Strides, Shamrockin' for a Cure, and Cars & 'Q
for the Cause.
The Cystic Fibrosis Foundation has grown very near and dear to my heart. I tell everyone about how getting involved with the Foundation has helped me and encourage others to do the same. With a late diagnosis, I had every reason to feel hopeless and alone,
but getting involved and connecting to others truly gives me hope for my future.
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Autumn Dawson Mathis
Adult with CF
Autumn is 40 years old and currently lives in Atlanta, where she was born and raised, with her husband, Joey and rescue chocolate lab, Lexie. Autumn works as a physical therapist assistant and a trained rehab instructor at her local Pilates studio, and
enjoys going to Braves games, concerts, and spending time with friends and family. Diagnosed with cystic fibrosis later in life, Autumn is grateful for research and funding for drugs like Kalydeco® that have kept her healthy.
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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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