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.
Having two sons living with cystic fibrosis, I struggled for years with the financial burdens and restrictions of the insurance market. Since the Affordable Care Act was passed in 2010, I no longer have to worry about lifetime caps and astronomical premiums -- two issues that caused enormous grief for my family.
April 15, 2021
Learning to Process Grief
The Unseen Struggles of CF
Life in the Granelle household was far more stressful before the Patient Protection and Affordable Care Act (ACA). Our lives were challenging enough having two children with cystic fibrosis. But the added burden of navigating a labyrinth-like and indifferent
insurance system only compounded our family's sense of crisis and fatigue.
We had health insurance and paid high premiums to secure the peace of mind knowing my sons, Andrew and Jamie, would be
taken care of, not realizing until too late how naive we really were.
Andrew was diagnosed with cystic fibrosis at three months old. Since his birth in January 1991, our baby had been losing weight, projectile vomiting, and having up to eight bowel movements a day. Then his breathing became labored.
He was first admitted to the hospital at three months old for a “tune up”: a term we became very familiar with that included IV antibiotics as well as enzyme and medication adjustments. His hospital
stay lasted four weeks before we could take him home again.
Two weeks later, we frantically returned. As I held my limp baby who couldn't breathe or eat, thoughts of more needles poking and prodding him and my own powerlessness to control the outcome nearly paralyzed me. I was mentally and physically drained. I also had to try to stay somewhat present for our three-year-old daughter who was left at home many times with our “support team” of family, friends, and sitters. Our strength and unity were tested again during this trip.
We lasted three more weeks at home before a panicked midnight call to our doctor brought us back. “Go directly to the emergency room,” he told us. “I will call ahead, and they will take you immediately.” We arrived at the check-in desk only to be turned
I went numb.
The administrator explained that we had no insurance. My immediate response was, “Impossible!” before whipping my head towards my husband.
“Didn't you pay our $3,000 premium?”
“Of course I did!” he shouted.
As the administrator searched deeper, she explained that we had exhausted our policy. I couldn't even comprehend what this meant. She began to explain that insurance policies have a lifetime cap and in less than three months we had reached it. The life
drained out of me. Taking its place was an anger over the false sense of security that dutifully paying for insurance had brought.
With God on our shoulders, Andrew's doctor came storming in, and Andrew was admitted immediately. His doctor always went above and beyond, and we are forever grateful and will never forget him. This visit lasted another three-and-a-half weeks.
Andrew was stable, and I was finally feeling a sense of hope. Watching him smile, eat, play, and sleep was all new and welcomed with joy and contentment. We knew more challenging times laid ahead, but we were happy to be all together and home.
The next few years were some of the most financially difficult of our lives. Without insurance, the cost of cystic fibrosis patient care became astronomical.
We turned to Social Security Disability insurance. Denied -- a word I became very familiar with and hated.
We finally got approval from another insurance company, however our premium was $3,500 per month. Andrew's monthly expenses -- for survival -- were approximately $3,000 per month, which didn't include co-pays and other out-of-pocket
Hours, days, and months of coordinating and researching what was available to help us was another draining task, but one I knew I needed to make happen. We needed $6,500 a month just for Andrew. We struggled for years. We lost ourselves in the process,
fighting to keep our family thriving. I honestly don't know how we did it. It's a bit of a blur and thinking back all I can see is gratitude that we managed.
Fast forward to August 1995 when our second son, Jamie, was born with meconium ileus, an extremely life-threatening complication of CF. Jamie laid in the hospital for three months and underwent two surgeries. In October, doctors sent him home saying they'd
done all they could.
Nurses taught me how to insert a feeding tube through his nose into his stomach, and we fed him through IV on a slow drip through the night. We
took turns staying up 24 hours to make sure he didn't asphyxiate or develop some new complication. It was another mentally challenging year. Our “support team” did not let us down. Food, babysitting, cleaning, and paid utilities were just a few of
the things our family and friends did to keep us afloat.
We finally got Jamie to a place where he was able to eat small amounts numerous times a day. He too started to thrive with baby steps, which was everything we could have asked for. Achieving the smallest milestone seemed like we had climbed Mount Everest.
We had our own problems with Jamie's insurance, which was $3,600 per month. We incurred more monthly expenses because it did not cover some of his meds or formula.
After years of relentlessly surmounting strenuous obstacles, my husband received an offer to work in North Carolina, and we decided to move from our home in New York. We were defeated. Not by illness but by the government and insurance companies. We had
no choice. We no longer could manage the financial burden. We saw no other way then to sell everything to pay off our debts leave our support team, and head to North Carolina where we could benefit from the lower cost of living. The better weather
was another bonus.
My story is like many. Taking care of a chronically ill child is a difficult task in itself, but one that parents' love and a good support network can overcome. The most devastating part of our family's experience was the compounded worry of being able
to afford and access the care we knew existed and that our sons needed to survive.
The ACA has been life changing for us. Because of the ACA, my sons cannot be denied access to or be charged more for insurance just because of their pre-existing condition, unlike before.
The ACA has relieved financial challenges and obstacles people with CF face with treatments. Although the ACA is not perfect, it ensures that CF patients cannot be denied coverage, charged more, have their benefits limited, or subjected to annual and
lifetime limits simply because they were born with cystic fibrosis.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of children with CF
I love being a mom and now a grandma. I run a learning center in North Carolina where we instruct, school, and evaluate students for learning disabilities. My joy comes from being able to help these students overcome their learning disabilities with learning plans, to advocate for them, and to make sure schools teach them the way they need to learn. My involvement with the Foundation began in 1991 when our first son was diagnosed. We helped run the Great Strides Walk in Suffolk County, N.Y. and later become involved with the Western Carolinas Chapter when we moved to North Carolina. I am on my second year being a district team captain in advocating for CF.
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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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