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 our son Sam died in 1990, I felt a kinship to everyone impacted by cystic fibrosis. I knew they could understand what we'd been through: parenting and losing a very special human being we loved so deeply.
December 12, 2017
I Have New Lungs and I Still Have CF
Ask a Case Manager: Picking an Insurance Plan and Understanding Social Security Disability
As a member of the Cystic Fibrosis Foundation San Diego Chapter Guild, my involvement with the cause has always been bittersweet. Although my son Sam died of cystic fibrosis in 1990
at the age of 9, I've worked hard for treatments and a cure for the rest of our children. But something has always been missing. It wasn't until we went backpacking
and hiking with some dear friends this summer that I realized what.
This summer, my husband John and I climbed San Jacinto Peak with our friends, Chriss and Tim. Chriss had never been backpacking before. The heaviness of her pack and the relentless upward climb on that first day was daunting to her at first. She almost
turned back and called it quits the first hour. My husband and I, experienced backpackers, knew that first day was going to be the toughest. We slowed our pace to hers. We told her what to expect, pointed out the unusual flowers along the way, kept
her engaged in conversation until she acclimated to the altitude, and just generally buoyed her up to know that yes, she had the grit to do this, and yes, she would not only make it to the top of that mountain, but she'd also feel victorious, and
see a view that few others have the privilege to see in their lifetimes.
In some ways, losing a child to cystic fibrosis is like that. The road is isolated, with not many people on it.
Here’s a family photo from 27 years ago. (Sam is on my left, on my lap.)
It's difficult and long and uphill. You carry a load of grief on your back, and the road seems endless -- like it will go on forever. You can hardly catch your breath, and you think you'd better turn around and call it quits before you even start. Because
the truth is, no one can carry your pack for you; you have to carry it yourself.
But you don't have to do it alone.
There are many of us who have been on this path for a long time. We just haven't had many opportunities to keep each other company, or to point out some unusual flowers along the way. So, let me take this moment to share one very special bloom.
This flowering shrub is from the Sierra Nevada this summer -- a Matilija Poppy, a rare and fragile native. I had never seen one before at such high altitude. But here's the thing: its seeds only germinate after they've been washed by smoke from a fire.
We found it bravely growing in a fire-ravaged setting among some barren rocks in the snow-capped mountains on Tioga Road into Yosemite. It blooms for less than a month ... but such a spectacular display while it lasts. And then, it's done.
That's why I am writing this. Our loved ones were on a different road, that of the Matilija Poppy -- a shorter, but equally spectacular bloom. Let us share this road together, and with others just starting out on it. We should not have to hike it alone.
I'd love to hear from you. You may reach me at firstname.lastname@example.org.
Mother of a child with CF
Jane lives with her husband, John, in Vista, Calif., where they brought up their two sons, Sam and Steve. Sam was diagnosed with cystic fibrosis at 5 weeks old in 1980, and lived abundantly for nine years. After 1992, Jane taught middle schoolers at a public visual and performing arts magnet school for many years. Today, she is a ghostwriter, helping others write their memoirs, and is now sharing her own story with you, in healing and wonder, pain, and love. In her free time, Jane enjoys camping, backpacking, gardening, reading, piano, and staying active with her family.
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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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