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.
In 2020, I went from having almost no knowledge about cystic fibrosis to the shocking revelation that I've actually been battling CF my entire life. At 53 years old, I'm still a work in progress, but I'm facing this new diagnosis head-on.
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I had heard about cystic fibrosis at some point in my adult life, but I never really thought much about it, how it affected people, or what would happen if I was diagnosed with the disease.
But then, I was hit with a lot of information about cystic fibrosis after I was diagnosed with it at the age of 52.
I don't think there are too many out there who have been diagnosed this late in life. I have heard most people are diagnosed as babies or a little older.
In my younger days, I played organized and backyard baseball and football with my friends. I also played badminton for hours and rode my bike a lot before I got a car in high school. Walking was no problem.
Heck, I walked home about a mile from junior high every day. And in college, I would walk around Penn State's huge main campus to get to my classes.
I had a cough when I was a little kid and I would get bronchitis a couple times a year starting in my 20s -- it took me longer to recover each time. My lung doctor diagnosed me with bronchiectasis in my 30s, but nothing was ever said about CF.
It was only later that I would have the extreme symptoms that eventually led to that shocking revelation.
I woke up on the morning of Dec. 30, 2019 and couldn't breathe - I was coughing up blood, and I asked a relative to call 911 for me. I took my first ambulance ride that day to the hospital a half hour away from my home. It felt like I had pneumonia, but
I was diagnosed with the flu and admitted.
Over the four-day stay, the doctors started nudging me toward considering a lung transplant, but all I wanted to do was to get out of the hospital and get back home. I lived with
my elderly mom, who has dementia and was alone while I was away, except for when good neighbors checked on her. During all of this -- and right before the coronavirus pandemic hit -- I had to put my mom into a nursing home because of her worsening
I had a telehealth appointment with my pulmonologist a few months after the hospital stay and, again, he mentioned the topic of lung transplant. I agreed to look into it. Later that day, I got a call from a contact at the University of Pittsburgh Medical
Center (UPMC) to talk about a lung transplant. She said I would need a caregiver who lived nearby before we even scheduled an appointment to discuss a transplant.
I texted my sister, Tina, about the phone call and she immediately said she and her family would move from their home in Indiana to help me out. I was shocked by the offer and, ultimately, grateful that she moved six hours east to be near me.
Todd with (from left to right) niece Sarah, sister Tina, and brother-in-law Caleb.
After Tina, brother-in-law Caleb, niece Sarah, and her boyfriend Hunter moved, Tina and I went to Pittsburgh in August 2020 for a five-day lung transplant analysis, where I went through many tests. As I suspected, though, they said I was too healthy for
the transplant list.
The last day of the evaluation, Dr. Pilewski said he suspected I may have CF. As the lead doc for the UPMC CF team, he scheduled me for a sweat test at Children's Hospital in Pittsburgh.
I took the test -- which really didn't involve sweating -- and a few days later I found out the diagnosis was CF. I was, again, shocked. Neither my late dad nor my mom had CF, but they apparently had passed the gene down to me.
A contact from the CF care team scheduled an appointment for me to meet the group. She suggested that I shouldn't do any internet research before the appointment because too much internet medical
research can lead to unnerving reading. My jobs as a content writer and as a newspaper sports stringer involve heavy internet research, so staying off the internet was challenging. I did refrain from researching CF though, because I knew my situation
could be different than somebody else's.
I'm a positive person, which has helped me during my share of troubled family times, so I decided to wait until I met with the CF team in September in Pittsburgh to take it all in. My head was swirling with information overload by the end of the meeting.
I took a genetics blood test at the appointment.
A team member explained that I'd be prescribed Trikafta®, a new drug that could potentially do wonders, if I was eligible.
I eventually qualified for the drug, and I noticed right away the junk in my lungs was loosening. I still have breathing problems, but Trikafta certainly helps me in conjunction with breathing treatments.
I have good and bad breathing days. Taking the stairs leave me breathless sometimes -- I still think about the morning a few years ago, before my diagnosis, when I lost my breath simply walking up a couple flights of steps to my office. Climbing stadium
steps to report on high school football games in 2020 led to some scary breathing situations and altered the way I cover the games. I'm fortunate that I'm now allowed to work remotely.
I've always been independent, but I'm thankful that Tina and her family are nearby and can help me out when I need it. I try to stay positive, exercise at the local YMCA because I think staying active helps, wear my mask, and continue my daily CF-fighting regimen of meds, nebulizers, and a Smart Vest.
I also have faith that finding out at 52 I have CF is all in God's plan.
Being that I only found out I had CF late in the summer of 2020, I feel like I'm a work in progress.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Todd is 53 years old and lives in Osceola Mills, PA. He is a content writer for website builder EZToUse.com and a contributing sports writer for the Altoona Mirror and other publications. He was a full-time sports writer at the Mirror and at The Progress
of Clearfield, PA, for nearly 26 years combined. He enjoyed writing a blog for the first time and hopes it helps any in the CF community. He also enjoys covering sports, working out at his local YMCA, rooting for the Yankees, Steelers, and Penn State
football, family time, social media, watching TV, and listening to hard rock and heavy metal music. Keep in touch with Todd by following him on Twitter.
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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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