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.
For parents of a child newly diagnosed with cystic fibrosis, it can be scary to read what's online about CF. However, I want to shed some light and positivity on what it's like to have CF. Everyone with CF is different, and it's possible for your child to lead a full life.
October 29, 2020
My Son's Feeding Therapy Journey
Pursuing My Goal to be a Pharmacist After Transplant
In the past couple of years that I've been on Instagram, I've seen a lot of posts about cystic fibrosis and how everyone deals with it on a daily basis. I was a very healthy child and teenager. Back then, we didn't have social media. I only ever knew
one other child with cystic fibrosis and that was in preschool. So, for the past 25-30 years, I didn't know anything about how other people lived with this disease. I figured most were healthy just like me. I played sports year-round from about age
3 through 18. I've always been able to go to the gym and exercise a few times a week. Sure, I've had some hiccups with my lungs, but nothing major. I've had somewhere
between 13-15 sinus polyp surgeries (I lost track after a while!). My problems with CF are my sinuses and my intestines. I've had a few intestinal
blockages as well and -- let me tell you -- they're awful. But on the bright side, my lungs have always been pretty clear.
Upon seeing so many posts from CFers in the hospital, hooked up to tubes, taking 100 pills a day, it made me sad. I had no idea so many were suffering because I never have. It broke my heart. For new parents who search on social media about CF, I am sure
you have become scared. No one ever wants to see their child like that.
But, always worrying about CF is just not my style. Sure, I've been lucky. I get that; trust me. But, I feel that new parents need to see the flip side as well.
Not every child born with CF will have tubes and needles in them 24/7. Not every child will need a feeding tube.
Not every child will need a lung transplant or have to live in the hospital. Yes, there are those who will, and it's important to always be honest with yourself.
The biggest takeaway about this blog post should be this: Everyone with CF is different, but we're all the same. What's abnormal to someone without CF is just a normal day for those of us with CF.
CFers don't know any other way than to fight and then move on with their day.
The best part is that even if your child has difficulties with this disease, every single CFer that I've ever known or seen has been a fighter. It's in our blood, like it or not. We don't give up. We don't stay down. We get mad at CF, and we get back
up. If it knocks us down again, we get up again. We don't know any other way. As Captain America says every time he gets knocked down, “I can do this all day.”
I've held a job in one form or another since I was 13. I was able to go to college; I got married to the most wonderful person on the planet, and we bought a house. I am doing everything
that a person without CF would do, and I've done it all with CF.
The best part about being a new parent to a child with CF is the introduction of Trikafta®. This medication has changed CF and has made miracles possible. Hopefully
soon, we will see a world where CF children may never know what the inside of a hospital room even looks like. Medicine has advanced to the point where significant improvements to daily life are possible, and as a new parent I would be so excited.
Always focus on the positive. Yes, the negative thoughts will happen. We are only human, after all. But there is so much to be grateful for, and I hope you see my story as a source of inspiration. Cfers don't want pity. We don't want to feel different
because we aren't. We're just a little wheezy. I am going to be 33 years old next month, and my life is just starting. I can't wait until your children are able to say the same. Peace and love to you all. Take care.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
I am 32 years old and live with my wife and two rescue dogs, Annie and Sawyer. I grew up in beautiful Saratoga Springs, N.Y., and I love to play guitar, relax outdoors, and watch movies and baseball (Go Yankees!). My wife and I love live music and every
year we see numerous concerts at Saratoga Performing Arts Center. You can find me on Facebook or search my Instagram.
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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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