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 emotions are constantly evolving through this journey with cystic fibrosis. And while I might feel like I am filled with sadness at times, my life is still very full.
December 7, 2015
To Tell or Not to Tell?
An Open Letter to Family and Friends This Flu Season
Almost two years ago, I wrote a blog post about a sadness I couldn't seem to shake.
I was optimistic that things would change; that I would get back to feeling more like myself. And while things aren't all “doom and gloom,” the biggest lesson I've learned is that as this journey is constantly evolving, so are the emotions. I'm always learning new things, about both cystic fibrosis and myself.
Below is an excerpt from that post, along with a reflection on where I am today.
Life's been really wonderful recently. *Knocks on wood.*
I'm loving my job -- both what I'm doing and the amazing people I get to do it with. There are plenty of adventures with friends in the coming months. I'm soaking up life's sweetness and feeling very blessed.
But there's also a
sadness I can't shake.
The older I get, the harder it is to not become my disease. It's incredibly important to me to be more than cystic fibrosis, but with each big life event I feel more and more trapped by the hard-to-swallow truths of
living with CF.
The big one? Knowing a shortened life -- one riddled with scary health obstacles -- is a strong possibility. As people get older, life gets more complicated, no matter who you are. And when you throw in a life-threatening illness, the complications seem to grow exponentially. It's a daily struggle to live my life outside of my disease -- to not let it seep into each moment of my day.
My biggest fear is that it's changing me. The loneliness … the fear … the what-ifs … I'm scared they're slowly chipping away at who I am.
In many ways, having cystic fibrosis has helped me become who I am. It's made me better, stronger, more empathetic. And I wouldn't change any of that. But it's also made me more fearful, less spontaneous and always worried.
There's this huge part of my life that very few people are able to understand. With cystic fibrosis, there's no break, no day off, no vacation. Every single day there are
pills to take,
treatments to do, neb cups to wash, scary thoughts to try and ignore.
It can be isolating and makes me feel separate from people, like I'm part of this “other” group. So I fall into the habit of pulling away or hiding parts of myself in order to feel more normal.
I know that much of this is just that: how I feel, and not how I'm actually perceived. And that's a reminder I keep tucked away to pull out at times like this.
I wish I could say, “I figured out how not to be sad!” or “Life is truly more wonderful than I could imagine!” But, the truth is, I am still sad. This past year I've felt more like a CF patient than ever. But the good things that have come from this are the support from my family and friends, and learning that I'm stronger than I think I am.
I've realized that the sadness I feel will always be a companion of mine, so I'm doing my best to get comfortable with it, to really feel it and become confident in knowing that all emotions have their place; without one we wouldn't understand the others.
This life with CF might have its “downs,” but that just makes the “ups” that much sweeter.
Adult with CF
Katharine was diagnosed with cystic fibrosis at the age of 16. A graduate of Denison University with a degree in English, she now has a successful career in communications. As a CF advocate, Katharine speaks at events sharing her story, serves on the CF Foundation’s Adult Advisory Council and is a board member for the Maryland CFF chapter. For her efforts as an advocate and fundraiser, Katharine was named one of the “Top 10 to Watch Under 30” by the Baltimore Sun and a Maryland’s Finest honoree. In her free time, Katharine enjoys reading, traveling with her husband Mike and eating locally. You can find Katharine at From A to Pink and The Bookly Club. Follow @katharinescriv on Twitter and @katharinescriv on Instagram.
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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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