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.
Over the years, I have received some tough questions from children with CF, but one has really stuck with me. And if I were asked it again today, I know exactly what I would say.
November 10, 2015
Real Talk: Expectations vs. Reality – Part 3
Go Live Your Life
Working for the Cystic Fibrosis Foundation as the spouse of a man with cystic fibrosis has been a really great experience. It's given me the opportunity to earn a living while working on something that I am very passionate about. I've met some really amazing people along the way and made a lot of friends. The CF community really is like no other.
But, I've seen some sad things too. I've cried for the loss of many people, and I've seen little kids have to be braver than they should. I sort of knew going into this that I would see the sad stuff because I am no stranger to the disease. But, something that I was not prepared for was the tough questions I would get from children with CF.
One question that's really stuck with me throughout the years came from an 8-year-old boy. I was new to the Foundation and at a Great Strides team leader's house working on their fundraising plan. The team leader was a mother of two boys with CF, and it was the family's first time doing the walk. Her sons were both home and playing video games while I talked to their mom. I shared with her that I have a husband with CF, and immediately we started talking about it and bonding over shared experiences. During our chat, her younger son came in and joined the conversation.
He asked a couple questions about what the walk was like, and then he looked me right in the eye and said, “I have CF. Do you think I will ever find someone to love me and get married like you?” I was stunned and looked over at his mom for some help. She looked just as surprised as me and was starting to tear up. It never crossed our minds that an 8-year-old would worry about CF keeping him from finding someone to share his life with. His mom just nodded at me to answer the question and I quickly tried to think of what to tell this young man sitting in front of me.
My mind was racing. …Of course he would find someone! Who wouldn't love this awesome person? I didn't know how to reassure him that finding a girlfriend wouldn't be an issue. I know plenty of folks with CF who are married and have families.
I muddled through my answer and -- to be honest -- I am not even sure what exactly I told him. But if he asked me again today, I know what I would say:
Yes, you will find someone to fall in love with.
And your CF will only be as big of a deal as you make it. I wasn't worried about entering into a relationship with my now-husband because he never made his CF a big deal. It was just something that was a part of him. And when you think about it, we all have baggage of some kind; it only affects us as much as we let it.
Yes, you will get married, if that's what you want.
There is no reason CF should stop you from getting married and living a normal life. CF has its challenges, but they are manageable and there are plenty of resources to help you navigate it all.
Yes, you can have a family.
True, you may encounter difficulties with fertility -- a lot of people with CF do -- but there are many options available out there. You can see examples of all of them within the CF community, and there are plenty of people who are happy to share their stories and point you in the right direction.
Marriage can be challenging -- with or without CF. Heck, being a grown-up at all is hard some days. But now, more than ever, you should plan on living a full, happy, normal (whatever that is!) life.
Widow to a person with CF
Errica is a widow to an adult with CF. She first got involved with the Foundation as a volunteer and eventually became the Great Strides director at the Southern California Chapter -- Orange County Office.
She went on to spend several years working at the National Office. Errica is a native Southern Californian and currently lives in Orange County with her cat and two Dobermans.
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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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