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.
Traveling with a kid with cystic fibrosis is better if you plan ahead, get organized, and create a schedule -- but always be able to roll with the punches if that schedule changes.
June 21, 2021
Risk Assessment in an Ever-Changing World
Looking Back at the First Year After My Son’s CF Diagnosis
Six years ago when I was pregnant with my son, my husband and I would talk about how we wanted our family to be well-traveled. Instead of just talking about the Grand Canyon, we wanted our child to experience it firsthand. We planned out road trips across
the country, as well as around California, where we live.
Two weeks after our son, Ryeson, was born, we found out he had cystic fibrosis. At first we thought that all our plans for family life would change.
And for the first few years, they did.
Our son is pancreatic insufficient, and when he was a baby, he was in the 5th percentile for weight. He was on a strict feeding schedule, and our lives revolved around when he would eat. Every day, it was a chore to get him to eat his enzymes and the food we put in front of him.
We would occasionally go on a few road trips from the San Francisco Bay Area to visit my in-laws in Long Beach. The eight-hour road trip was a lot at first. Dealing with extra feedings and his
nebulizer treatments meant that any road trip we took would have to include several stops for us to feed him; I pre-planned these
stops down to the place and time.
Once at our destination, we would either stay with family or in a hotel for the weekend. All our activities were scheduled around Ryeson's feeding and nap times.
When Ryeson was 2 1/2, he had surgery to get a G-tube put in. That changed everything for us.
Instead of eating several times throughout the day, we only had to do two big feedings and then he could eat snacks in between. This allowed a little more freedom when it came to family travel, and it eased the anxiety my husband and I felt about having
to feed Ryeson enough for him to grow.
After his feeding-tube placement: We were not stressed out on a daily basis, which meant day-to-day life was a little easier -- and road trips around California and Nevada became even more common.
In the summer of 2020, like many other families, we decided to buy an RV because we were feeling the impact of being stuck at home due to the pandemic.
Before the pandemic, we had plans to fly to Hawaii with the family (Ryeson's first flight), but we couldn't risk it. Instead, we decided to take the time off from work we had already planned and use it to go camping.
We knew we could travel within a few hours of our home, go camping, stay socially distanced from other people, and have an organized place for all his nebulizer treatments and feeding tube accessories.
So, we bought an RV-thankfully we found a smaller one that worked for our family of three (plus two small doggies).
Our first RV trip was an hour away, and we quickly realized that while we packed everything Ryeson needed for his nebulizer and feeding tube, we had forgotten a few essential things (like chairs for outside).
It was just the three of us, so we were able to be on our own schedule, buy what we needed, and have a lot of fun. Ryeson was sad when he saw other kids riding their bikes together, but we told him he had to stay in the campsite because of social distancing.
We had enough fun activities planned (like going to the beach) anyhow, and he really enjoyed that first camping trip.
We have traveled around California since then, camping in the Sierras, just south of Lake Tahoe, and right on the beach near Pismo Beach in central California.
Just like camping in an RV, traveling with a kid with cystic fibrosis is better if you plan ahead, get organized, and create a schedule -- but always be able to roll with the punches if that schedule changes.
Tips for Road Trips With Your Child With Cystic Fibrosis:
We have several road trips planned for the upcoming summer months, and we are excited to create memories with our family using these tips to mitigate any stress and help us feel prepared.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of a child with CF
Shana is a best-selling children’s book author and digital marketing educator who is passionate about connecting online, elaborate cheese boards, rosé wine, and traveling with her family. Find her at shanabull.com and randallthebluespider.com, or on Instagram at @sharayray and @RandalltheBlueSpider.
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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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