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 son has had a problem with eating ever since he was born prematurely and diagnosed with cystic fibrosis. After a lot of stress and anxiety about reaching his weight goals, we finally enlisted an occupational therapist, who helped him learn to love eating.
November 4, 2020
Not Letting CF Dictate My Life
Advice to New CF Parents From an Adult With CF
March 26, 2017 is the day that forever changed my life. I was 28 weeks pregnant with fraternal twin boys and woke up that morning with some unexplained pain. I tried to convince myself that everything was fine, but as the pain continued, I decided to
call the doctor. An hour later, I was at the hospital being told my pain was contractions, and they were going to do everything they could to keep the twins in for as long as possible. Unfortunately, I had to have an emergency C-section a few hours
later. At 3:55 p.m., Lucas was born weighing 2 pounds 15 ounces and minutes later Benjamin was born weighing 2 pounds 8 ounces. We had no idea what to expect as first-time parents and were not prepared for how intense the neonatal intensive care unit
(NICU) would be.
After he was diagnosed with cystic fibrosis, Lucas spent 95 long days in the NICU. What kept Lucas in the NICU wasn't his lungs, it was his feeding issues. He had been getting his nutrition for 2 ½ months from a nasogastric tube and when it came time
for him to transition to bottle feeding, Lucas struggled. He lacked the endurance to drink from bottles, but he slowly built up his strength and we brought him home on June 28, 2017.
Lucas had challenges when it came time to transition from bottles to eating table food. He had developed aversions
to food and struggled to grasp the concept of chewing and swallowing. Anything that was textured and not a puree caused him to gag and throw up, and I certainly wasn't helping by trying to get “just one more bite” in. This caused us so much stress
and anxiety for almost two years. I became obsessed over what he was eating and how much he weighed because there was so much focus on meeting the body mass index (BMI) recommendation. He was just under the goal BMI until he turned 2 and then dropped
a bit because of the change in the growth charts. Lucas was gaining weight consistently, just not as much as his CF team wanted to see. I would leave each clinic visit in tears as I was scared to lose him because he wasn't meeting the BMI recommendation.
I was embarrassed that he was 1 ½ years old and was only eating pureed food and still drinking formula from a bottle.
We finally accepted that we needed help because Lucas wasn't progressing and the more I pushed him, the more he refused.
We already had early intervention services for physical therapy, and we decided to enlist the help of an occupational therapist (OT) to help Lucas progress with his eating. I thought that the OT would come for a few weeks and then we would be on our merry
way to food town; but, in reality, we worked with the OT for almost a year.
What I didn't know was feeding therapy doesn't happen overnight and -- in fact -- it is a slow, gradual process.
We had to take a step back and get Lucas comfortable with touching food and getting messy. This was the complete opposite of what he was used to. I spent the first year of his life protecting him from germs and bacteria by not letting him put things in
his mouth and kept his hands clean at all times, which only added to his distrust in food and textures. We spent several months on strengthening his chewing ability and working on tongue movement, which is an essential part of eating that I never
realized. We would have him kiss foods that he initially refused just so he could get the feel and taste of them. We would put all different sorts of food on his tray for him to touch and get messy with even if that meant that everything would eventually
end up on the ground.
Sometimes the OT would do sensory play prior to Lucas getting in his high chair to help him let his guard down. Slowly, we started introducing crunchy foods like crackers, chips, and veggie straws. We worked on the crunchy things for a few months and
kept adding on different foods, one at a time. Lucas slowly began to trust more and more foods and started eating all his meats to the point of enjoyment.
All the hard work paid off in the end, but I really struggled mentally during this process. I lost sight of what was really important and couldn't see the light at the end of the tunnel. I focused
so much on the BMI goal that I basically shut out everyone and took all his care upon myself.
I felt that I was failing as a mom, and I was the one causing him to not weigh enough. I tracked all food intake, counted calories and fat, and caused myself so much undue anxiety and stress.
I felt so isolated and alone and didn't see that my husband was trying so hard to support me, but -- because I was in so deep -- I wasn't able to recognize it. Being the person that he is, my husband wasn't going to give up on me. He helped me get in
to see a therapist and psychiatrist for medication management and cognitive therapy. I am so grateful that he saw that I needed help and was there with me all the way. As Lucas continued to improve with meals, I started to relax a bit and started
to involve Mike in Lucas's meals more. We started being a family again and enjoyed our mealtime together.
One of the hardest parts of having a child with CF is the isolation. It's such a rare disease that no one really understood what we were going through, especially CF weight challenges. With contact precautions, even if I was able to find another CF mom,
we wouldn't be able to get together with our kids. I yearned for another CF mom who could relate to us.
I'm incredibly lucky to have found another CF mom whose son is three days younger than Lucas. We happened to meet on a CF mom blog group, traded phone numbers, and spent more than an hour on the phone the first time we talked. I was so happy to have found
someone who knew exactly how I felt, and we bonded instantly. I don't have to explain myself to her; she already knows what I'm feeling. We talk about our CF challenges, what our wild child did that day, what funny sayings they repeat, and -- most
important - we pick each other up on those days that are more bad than good. We have developed a relationship that most people would never understand. We've even traded poop pictures from our boys because talking poop is “normal” for us.
Lucas is now 3 ½ years old and is thriving. I chose my mental health over focusing so much on food not only for myself but for my family.
Lucas gets excited to eat and has really come to enjoy eating. He says things like, “I can't wait to eat that,” or, “Mommy that looks yummy!” He enjoys eating as a family and even helps clean up! Every once in a while, he has his moments of “food boycott,”
but he's a toddler and that's what they do - he keeps us on our toes. The odds were stacked against him being born three months premature, but Lucas is a fighter. He's not going to let anything stop him.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of a child with CF
Melissa is a mother to her son Lucas, who was diagnosed with CF two weeks after birth, and Lucas's fraternal twin brother, Benjamin, who is watching over his family from heaven. Melissa graduated from Florida State University with a bachelor's degree
in management. Melissa works for a Fortune 500 health insurance company as a business change director. She loves to cook, travel to exotic beach destinations, paddle board, and practice yoga. She also is a dog lover. Melissa is learning to live in
the present and that life is not about the destination, it's about the journey. She lives in Virginia Beach, Va., with Lucas and her husband, Mike. You can connect with Melissa at Melissa.Thorpe82@gmail.com.
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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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