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.
After deciding to get a gastrostomy tube for our son, my husband and I made sure he was prepared for the procedure. What we weren't prepared for was the difference it made in his health, energy levels, and personality.
March 22, 2018
My Two Siblings' Enduring Legacy
6 Tips for Staying Motivated When It Comes to Life With CF
Here we were. Staring down the barrel of the obstacle we had been trying to avoid for the past three years: a gastrostomy tube (G-tube). I spent so much time worrying about what the moment would feel like. I thought I'd feel like a failure. I thought I'd feel sadness. I thought it would feel like the worst thing in the world.
The truth is, I was feeling everything but sad. I was excited -- beyond excited. I was ready and eagerly awaiting Major's surgery.
We didn't fail. We worked so hard. Major worked so hard. His lack of eating was just part of being a toddler, and, with CF, being a picky toddler just doesn't fly. Rather than failing, we were, in fact, winning! We had a tool that could help Major
immediately and save him stress and allow him to gain the weight he so desperately needed.
The next step was to tell Major. My husband and I wrestled with the timing on this. When do you tell a 3-year-old that they are having surgery? It's a fine balance between giving enough time to process, but not giving so much time that your child is anxious
and more fearful than need be. One thing you should know about me is that I don't do parenting books. Save for requested advice from friends, I'm winging it. But, to prepare for this announcement, I had a chat with our child life specialist and then
formed a plan. We decided to tell Major five days prior to surgery, which gave him two school days and a weekend before going in. Plenty of time for questions!
Drew and I made the G-tube (or superhero port, as well call it) the best darn thing to happen to Major! We told him how cool it was going to be to get some food overnight, how good he would feel, and how amazing his new superhero powers would be. By the
time surgery day arrived, Major was ready to go and walked himself right into the surgery room. I was a bit of a mess with him going under anesthesia for the fifth time in his life, but moms worry.
After an hour in surgery, we were notified that Major was done and resting in recovery! The hardest part of the surgery was not eating -- note the irony here for a kid who didn't love to eat. He not only had to fast the night before surgery, but also
for 24 hours after to allow healing time. Lots of distractions helped him get through this, including a special toy delivery from our local CF Foundation chapter.
Learning to use the G-tube was yet another thing that was not as hard as I had feared it would be. Identifying a few other feeding tube moms that could help answer my questions was so important. Major was quickly proud of his G-tube, showing it off to
anyone who wanted to see it. He took charge of his tube as best a 3-year-old could, handing us cleaning supplies for dressing changes and telling his doctors when he was in pain.
Within one month, Major gained two pounds. Two pounds! He had never gained a full pound in three months, so this was truly incredible. If there had been any lingering doubt about our decision, it was now gone. He has now had the tube for four months and
continues to grow and gain weight. He is confident with his tube, able to do any and all activities he wants to do, and has no ongoing pain. Aside from adding one more “to-do” to his plate (no pun intended), life with a G-tube has been pretty slick.
Major is a new child. He's more energetic, laughs more, runs more. He's louder, crazier, and funnier than ever. Our hearts have burst over and over watching Major come into his own since getting the tube.
With the happiness has come some pain. We have realized that although Major seemed high energy and goofy before the surgery, he wasn't living to his potential. Within a week of getting his G-tube, he blossomed into the boy I described above. His energy
and personality have grown so much that his teacher teared up on his first day back to school. Everyone comments on this wonderful change; and it is just that -- wonderful. However, my husband, Drew, and I can't discount the pain in knowing our little
boy didn't feel the best he could have prior to getting the tube.
With that said, we got that superhero port at the exact right time for Major. Getting used to the idea, discussing with our CF care team, and not dragging our feet all led to the right decision
at the right time for Major. No matter how long Major has that G-tube in his tummy, I will forever credit it with giving him his best life.
Read Part 1 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.
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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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