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.
Google has made it easy for everybody to research cystic fibrosis, but CF is only part of my story and how I tell it is up to me.
May 3, 2016
Clinical Researchers Prep for Record Year of Trials
Listen, Learn and Engage
Managing my cystic fibrosis is a big part of my life. Between
CF care center visits, I also work to manage my identity. Although the old maxim, “I have CF but CF doesn't have me,” is appealing, it's not always true. Sometimes I struggle to separate myself from my illness.
And if I can't always separate the two, is it unrealistic to expect that courtesy from others? I'd like to say that living with a chronic disease made me immune to anyone else's opinion, but that's hogwash. If anything, I might be more insecure and self-centered than your average twentysomething. It's hard not to think about myself when so much of my day-to-day centers around my upkeep. At least that's how I'm justifying it these days.
In elementary school, balancing CF and identity wasn't complicated. Growing up in a small town in Maine, everyone in my class knew I had CF and it never felt like a big deal. My parents were hopeful and honest when it came to my disease, so I was hopeful and honest when my peers had questions. If they asked about my
enzymes or my clubbed fingers, I answered as best I could. Turns out, most 8-year-olds don't have loads of questions about
CFTR mutations, so my CF was often met with a shrug and a game of foursquare.
As I got older, the discussion got trickier. Google became a transitive verb just as I hit puberty, and overnight the CF conversation flipped.
I was no longer in charge of my story. If kids had questions about my illness, they didn't have to ask me; they could look it up.
Like most teenagers, I figured my classmates were always talking about me. And in my case, I imagined a Google search as the precursor to any good Ali gossip. To make matters worse, “bulky, greasy, foul-smelling stools” populated the top results for a simple "symptoms of CF” search.
My goal at the time was to fit in and be cool. Having a rare disease deviated from the fitting in plan and
the GI tract isn't exactly synonymous with cool. (Also, may I just add, there's a special place in hell for whoever started the whole “girls don't poop” propaganda.) But whether my peers were actually googling CF or not, the information existed for anyone to find and interpret -- and I worried that information would blur the line between this disease and me.
I'm drinking my daily dose of Miralax as I type this and am happy to report that at 28 years old, I'm long past stressing over what others might think about my stool, bulky or not. If you've ever needed an enema to treat an intestinal blockage, you understand the importance of a good BM (and a sense of humor). However, I do still worry how CF could shape perceptions of me.
When I met my boyfriend, these anxieties amplified. I dreaded his inevitable CF research. The median predicted survival age is an obvious bummer, but so are the many and ugly complications he would probably read about, from
liver disease and
cystic fibrosis-related diabetes to
anxiety and depression.
I resented CF for placing an enormous amount of pressure on someone I barely knew -- and potentially scaring him off. "Hey, I know this is our second date, but if things go well, want to be my caretaker when my health declines?"
Even more, this disease is crazy complex! Its effects can vary from person to person. Would he read someone else's CF story and assume mine was the same? I found myself working to relieve his anxiety about my current health (my lung function is pretty good!), while managing expectations for the future (but this disease is progressive…).
The same balancing act surfaces in my professional life when employers find out about my CF. How can I prove I'm still a good employee after they've read up on hospitalizations,
transplants and disability leave?
The good news is I've never lost a friend, partner or job over my CF. Though I don't know if I'll ever stop worrying about how people view me in relation to this disease,
blogging about cystic fibrosis and
sharing my experiences with the CF community has helped me regain some control over my identity and my story. And when it comes to telling that story, I've found the best approach hasn't changed all that much since grade school -- I'm still doing my best to stay hopeful and honest.
Adult with CF
Ali has been a CF advocate for most of her life, raising funds with her family for Team AliKatz. She and her husband, Austin, are on the Cystic Fibrosis Foundation Tomorrow’s Leaders board in Portland, Maine. Ali also works full-time for MamaSezz, helping people feel and eat better with plant-based meal delivery. She’s a graduate of the T. Colin Campbell Plant-Based Nutrition Certificate Program. She lives on the coast of Maine with Austin and their best friend/dog, Sally. Connect with her on Instagram or her blog.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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