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 cystic fibrosis patients and families face complicated issues related to getting the care they need. But CF Foundation Compass makes sure that no one has to do it alone.
For many people with cystic fibrosis, dealing with insurance is as much a part of living with the disease as nebulizers and vests. Many people with CF and their families face issues related to getting the care they need, but no one has to do it alone.
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.
My husband and I spent our first weekend as parents contemplating the news that our new son had cystic fibrosis. Although we handled it in very different ways, we were ultimately able to overcome the initial shock, with an entire team to help us along the way.
Elaine Ruh, MBA, PHR, SHRM-CP
August 10, 2018
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"Nick and Elaine, I know you guys are just settling in with Maddox, but I have news that I have to share with you. Maddox has cystic fibrosis." This phone call from our pediatrician on a Friday afternoon would change the rest of our lives.
Nick and I were married for over five years when we decided to start a family. Maddox was born on a Sunday night on one of the hottest days in August that year. Nick and I enjoyed pizza in the recovery room and our lives as a new family started. We brought
Maddox home a few days later and started settling into our new routine.
That particular Friday afternoon was an exciting one for me: We were doing Maddox's newborn pictures at our house. He was a bit cranky, but who wouldn't be given the circumstances (AKA, trying to figure how to stretch out while adjusting to new lights
and loud noises). Then, Nick's phone rang with a call from our pediatrician's office.
I knew it was serious when he asked me to join him in a separate room. He told me that our doctor said that Maddox tested positive for CF and asked us not
to Google it as we would only hear the bad stories. Our doctor had also arranged for us to meet with the CF team in Green Bay first thing Monday so we could hear from them what this entails.
I was immediately in a state of shock and denial. No way that this could be our little guy; I didn't even know what cystic fibrosis was. In fact, I couldn't even say it right and had to keep looking at the words. I told Nick that this couldn't be correct
and that I wasn't dealing with the news at this point. I wanted to go and enjoy our newborn pictures. I was determined not to let this ruin my evening and that the tests were wrong.
Well, if anyone knows my husband, he researches everything -- cars, tools, diets, work boots … you name it. Needless to say, he did not heed our pediatrician's advice and began to research the disease.
I told him that I only wanted to hear the good things, and the only thing he really said to me was that the average life expectancy had risen drastically over the past 30 years and that research is ongoing. Wow. Although I really didn't know how to respond
to that, I said, “So, you're saying that this isn't good.” “It's going to be a challenge for sure,” he replied.
We got through that first weekend as brand-new parents, trying to understand diaper changing, bottles, pumping, healing, sleeping, trying to keep a clean house, and the occasional guests. I would say sleeping was the hardest part -- not just with a newborn,
but with the unknown and anxiety of 'what if.' It was both the best and worst weekend of our lives, and we had no idea what to expect for our appointment or our future.
Then, we were at the hospital -- my heart pounding in my chest waiting for the receptionist to call us back. Soon, we were introduced to our CF doctor and nurse, who gave us a basic overview of the disease and told us a little about themselves. From there,
I don't remember anything they said as I was zoned out thinking, “This is really happening. There is something wrong with my perfect little boy. Is there anything I could've done differently during the pregnancy? Will I outlive my child (the worst
fear a parent has)?”
The drive home was a blur. I don't remember if we even talked about anything because I was so out of it -- stressed out and exhausted while holding a ton of paperwork with information about all our next appointments.
Later that week, Nick and I had a heart-to-heart chat that really helped us move forward. We made the decision that Maddox's CF would just become part of who we are. We were not going to hide it. We were not going to let it hold us back from living a
life that made sense for us. We would adapt, support, and move on. This has been our mentality ever since.
Next, we decided that we needed to tell our parents and closest friends. It's one of those memories that I will never forget.
With our parents, my brother, and our best friends in our living room, Nick made the announcement sitting in his recliner. “We recently found out that Maddox has CF,” he said, and we began describing it as best as we could (we weren't subject matter experts
just yet). As you would imagine, they had the same reactions that we did. “Are you sure?” “How did you find out?” “Now what?” We explained to them that we had an entire medical team to help us, and well … we would just figure it out!
We had our first CF appointment with the entire CF care team a few weeks later, which included a physical therapist, dietitian, pharmacist, social worker, geneticist, nurse, and doctor. They each explained at the highest possible level their role on the
CF team and how they could support us along the way.
And sure enough, our support network is right there with us to help reinforce our message to Maddox. Our family and friends jump in to do a vest treatment with him whenever they are over. When we are all about to eat and I am setting the table, someone
else is jumping up to get the enzymes ready. This is our “normal" life. Our journey has only begun, and I can't wait to see what is next. Potty training?
Elaine Ruh, MBA, PHR, SHRM-CP
Mother of a child with CF
Elaine is a mother to her son, Maddox, who was born with cystic fibrosis. After earning her Master of Business Administration (MBA) from Concordia University Wisconsin, she now works in the technology business as a Senior Human Resources Generalist and volunteers on the local Fox Valley Society for Human Resource Management Board of Directors. Elaine recently volunteered as an advocate for the Cystic Fibrosis Foundation and just wrapped up her second year leading a Great Strides team. Elaine lives in Appleton, Wisc., with her husband, Nick, son, Maddox, and their pups, Remy and Lexi. You can follow her on her blog.
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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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