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.
My husband and I tried everything to encourage weight gain in our young son to no avail; so we chose to get him a gastrostomy tube.
January 23, 2018
Life Planning When You or Someone You Love Has CF
The Journey to My First "Lung-iversary"
As a parent of a young child with cystic fibrosis, I've discovered some surprises along the way. In the earliest days after my son's diagnosis, I figured our worries would be centered around lung health. Although I wasn't entirely incorrect, the number
one difficulty Major has had since birth has been weight gain. Our CF care team told us weight gain is a struggle for people with CF, but we couldn't have imagined the roller coaster
we were about to ride.
For the first two years of Major's life, he did pretty well. He started at the first percentile for his weight over height calculation and worked his way up to the 74th percentile. He was thriving and growing, thanks to pancreatic enzymes and lots of fat.
In October 2016, Major had his first exacerbation. He lost a little weight while he was in the hospital, which wasn't surprising. Following his discharge, we set a plan in place to gain that weight back and then some. We added weight gain supplements
to Major's routine. Major continued to gain weight, though in very small increments. We remained positive -- weight gained is weight gained.
Major had been a good little eater prior to his hospitalization for the exacerbation. But if you've ever raised a toddler, many do turn into picky children around age 2. Major continued to try new foods, remained interested in mealtime, but he just wasn't
eating much -- certainly not enough to gain the weight he so desperately required.
When his gains stalled, we added a second bottle of his supplement to the routine. That didn't go as smoothly as the first. Supplements are a great tool, but they weren't Major's beverage of choice. We added heavy whipping cream to his whole milk, we
put chocolate syrup in every dairy drink and continued to put butter on every item we possibly could.
At the beginning of 2017, we added an appetite-stimulating medication into the mix. It worked great! This is it. We finally had a child who was asking to eat and cleaning his plate. That was fun while it lasted; after a few months it wasn't working very
well. We started cycling off the drug to maintain its effectiveness, then we moved to increasing the dose. Major continued to gain weight very slowly, eventually working his way back down the growth chart.
At the end of summer 2017, Drew and I decided that if Major didn't hit a certain weight at his next CF care center appointment, we
were going to ask about getting a gastrostomy tube (G-tube).
The tool hadn't come up yet, and I was admittedly terrified to broach the subject. I didn't want Major to have surgery, and I truly felt that things would click any minute. As a family, we walked into clinic and discovered that Major was 1.5 pounds under
the goal we'd set for the visit. It's not that the number was so bad, but rather what it meant for his height-to-weight ratio. That day, he fell to the 23rd percentile, far from his all-time high in the 74th percentile.
I cautiously asked our gastrointestinal (GI) specialist when we needed to consider placing a G-tube, and he said it was time. I don't think I was quite ready to hear that it could happen so quickly, and I did cry a little. Despite all the evidence in
front of me, I thought Major had a long way to go before needing that intervention.
Together with our GI specialist, we created a month-long plan to give Major one last shot to gain weight. We increased the appetite stimulant again, focused on two supplements per day, and went pedal-to-the-metal on high-fat foods. We also began seeing
a feeding therapist weekly to help Major learn to find fun in eating. Word to the wise: Sitting around him directing every bite, begging him to eat, and not sitting down as a family very often were all things holding us back from success.
In that last month, we threw a lot of new tactics Major's way. I found that he was eating better for other people, so I had Major's grandparents take meal shifts. Drew and I would go for a walk or bring him to someone's house for a meal, while we disappeared
for 45 minutes. My mom ran Major all over town for lunch dates. Our hope was that some of the pressure to eat may have been alleviated by being in another location. We tried it all.
In the end, Major didn't gain much weight. When I saw the scale at the end of the month, I was so emotionally ready to get the G-tube, and we knew Major was physically ready for it. We agreed it was time. There wasn't anything further we could do besides
make this important decision.
Getting the G-tube was a decision I feared from Major's infancy all the way until he was 3. Then the moment came when I was no longer scared, and frankly quite excited, to get him the help he needed.
I'd like to say that I've never felt stress from his eating habits, but that is far from true. Other elements of life with cystic fibrosis are more black and white. You do breathing treatments.
You administer medication. Certainly, there are unknown outcomes with those things, but doing them is pretty cut and dried.
Food is different. Even when you do your best, you may not be hungry. And even if you eat anything and everything, you may not be able to gain an optimal amount of weight. In those cases, it's okay to get help if you need it.
Read Part 2 and Part 3 of the Strubes' G-tube journey.
Mother of a child with CF
Jaclyn is a mother to her son, Major, who was born with cystic fibrosis. A graduate of the University of South Dakota, she now works in the financial services industry and also runs an online health coaching business. Jaclyn is a state advocate for the Foundation, a member of the CF Parent Advisory Council at Blank Children's Hospital, and an active fundraiser for Great Strides. She also serves as the Foundation's 2019 national advocacy co-chair. Jaclyn lives in Des Moines, Iowa, with Major, her husband, Drew, and their dogs, Eason and Lennon. Follow her blog, MAJOREASON.
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails