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.
If not for my mother and my wife, I would not have survived this arduous, 50-year journey with cystic fibrosis. But now I have another ally: Trikafta® is having a substantial impact on my health.
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My mom and I have waited more than 50 years for the miracle of Trikafta®, a drug that has significantly restored my lung function, greatly improved my quality of life, and changed
the trajectory of my disease.
This cystic fibrosis story began before I was born when an infant on my mom's side died of diarrhea, which we later realized was likely untreated CF. Decades later, imagine how shocked and heartbroken my mom must have been when she learned that I had
the same diarrhea disease at 18 months of age. Even though the term cystic fibrosis had been added to the medical lexicon in 1938 (when life
expectancy was 6 months) little progress in the treatment of CF had been made between then and 1970 when I was diagnosed. In fact, upon discharge from the hospital where I was first diagnosed,
the doctor gave my mom two prescriptions: enzymes to be taken with every meal and the antibiotic erythromycin to be taken every day to help manage chronic infection.
The doctor's ominous last words to my mom before she left the hospital were, “Even if you do everything we recommend, he'll be lucky to make it to his 10th birthday, so don't be too hard on yourself.”
Reeling from the doctor's diagnosis and prognosis, my mom, who's one of the most courageous fighters I've ever known, did not give up. Rather, before they even got home from the hospital my mom and dad decided to fight the disease with everything they
had by learning as much as they could about it. They found a local expert, Dr. Steward (who I loved), and followed all his recommendations for my care. He and his staff taught my mom how to do percussive treatments (PT), and he recommended that I sleep in a mist tent and isolate from others and that my family practice rigorous infection control.
With their support and encouragement, my mom undertook a grueling daily regimen that entailed several hours of care including cleaning and disinfecting my room, bed linens, and mist tent, as well as doing two one-hour PT sessions. Additionally, my mom
made sure I stayed in my mist tent -- which is no longer used for CF -- for 12 hours every day and only went outside on days in which there were no smog alerts (approximately one out of three days). This was in San Jose, Calif., where the city was
all too often shrouded in a haze of pollution in the 1970s before the current environmental emissions rules were implemented.
My dad, for his part, remodeled my bedroom by replacing my window with a large glass slider, so I could watch my brothers play in the backyard on days in which I couldn't go outside. Fortunately for me, during a vacation in rural Québec when I was 5 years
old, my parents noticed that my cough and my energy levels improved. They correctly surmised that the improvement was attributable to the higher air quality. So, my dad, who was an engineer at IBM, conducted an extensive analysis of air quality surrounding
all the IBM plants in the country. Shortly thereafter, he submitted a transfer to relocate the entire family to Apalachin, one of the smallest towns in one of the most rural counties in upstate New York.
Although moving to a one-traffic-light town from the military and industrial hub of San Jose was undoubtedly a massive upheaval for the whole family, it did enormously improve my health so that I was able to do normal things for the first time in my life,
including playing hockey and football and running track. Fortunately, that change enabled me to live a relatively healthy life except for a couple of nasal polyp surgeries and sports injuries.
However, as I entered my teenage years -- when most kids my age were struggling with angst, puberty, and identity issues -- I was wrestling with life-and-death issues as I watched up close as one by one the CF kids I knew died, and I struggled with survivor's
In a few short years, my once bright, optimistic disposition began to darken, which led to a period of depression, drinking, and self-destruction. In high school, I drank regularly,
experimented with drugs, and had more than a few run-ins with the law, which all culminated in my referral to mandatory inpatient treatment two weeks after my 18th birthday.
I can't even imagine how crushed my mom must have been to watch me go through all that after she fought so hard for so many long years to keep me alive. Despite how exhausted and saddened she must have been -- particularly since my dad was also in the
late stages of lung cancer -- she made the long, lonely, five-hour journey every Sunday for the six weeks I spent in rehab. She was also there to celebrate when I successfully graduated, took me to countless Alcoholics Anonymous meetings, and even
drove me to Syracuse, N.Y., to help me move into the halfway house where I would live for the next three years.
She had immense patience with me when I went through the emotional hills and valleys of early sobriety, and she was so tender and compassionate as she helped me work through the loss of my dad after his long, hard fight with cancer.
The night I drove myself to the ER after experiencing my first serious bout of hemoptysis (coughing up blood), she nearly beat me to the hospital even though she was two-and-a-half hours away.
Throughout my whole life, whenever I faced setbacks in my battle with CF, including dozens of infections, superinfections, more infections, hospitalizations,
IVs, surgeries, and secondary diagnoses, she was a consistent, steady, calming voice, offering hope and reminding me of the joy I had to look forward to when there was no more suffering.
My mom and I, as well as my wife of seven years, watched hopefully as the new class of CF modulator drugs progressed from studies to FDA approval. Through the ups
and downs of applying and getting turned down for numerous modulator studies, finally receiving other modulators, and being disappointed with the results, we all prayed, hugged, cried, and waited patiently -- yet expectantly -- for the breakthrough
we knew was coming. On the day I finally received Trikafta, we all cried because we had a feeling -- based on the buzz -- that this would be a game-changer. Needless to say, it lived up to the hype. My first pulmonary function tests (PFTs) after starting
the drug showed that my lung function improved to what it was eight years ago.
My cough is so mild now that I can't remember what it was like to cough every two minutes and pull off the side of the road every morning on the way to work because I coughed myself dizzy.
Every time I experience one of these Trikafta moments, I can't wait to share the joy and gratitude with my mom and my wife. From failing to thrive to thriving in life, I've come a long way from mist tents to Trikafta -- a journey that would have been
impossible but not for my wife, MaryGrace, and my mom, Gisele Yelonda Marie.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Mark was diagnosed with CF at 18 months old. Today he is 50 years old and lives in Albany, N.Y., with his wife, MaryGrace, and stepson. He has a master’s degree in psychology from Marywood University and a master’s degree in public administration from Syracuse University. Mark worked six years in the New York governor’s division of budget and works full time at the state Department of Health. He is passionate about behavioral and mental health issues, including research on CF adults (which he presented at the 1999 American Thoracic Society International Conference). He and his wife love their Harleys, cycling, and church ministry. Catch them on YouTube or Facebook at “Breathing Grace."
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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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