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.
When my daughter was diagnosed with cystic fibrosis as a newborn, I was shattered. But then, I decided I would raise her to know that CF was something she had, not who she was.
Nicole K. Montez
November 2, 2018
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I got out of the elevator on the third floor and saw a sign in front of me that said “cystic fibrosis pulmonary clinic.” Only a few days ago, we had received the call that something was wrong with our daughter's newborn blood work. We had been back and forth to her pediatrician because she wasn't gaining weight during her first couple weeks at home. I looked down at Ali in her carrier and saw how truly vulnerable she was in this world. So tiny. The call we feared came the next day. Ali had been diagnosed with cystic fibrosis. I was numb.
A few days later at the children's CF clinic, I was protectively holding Ali in my arms as a whole team of people -- including the head doctor, nurse, dietitian, and social worker -- entered the room. Their posture and disposition said they were all business before they even spoke. I was terrified but didn't show it.
I sat numbly as they told us about the realities of CF: a lifetime of medical expenses; the possibility of her not surviving childhood; the life expectancy back in 2001, which was 37 years old; that she might not be able to participate in sports. The list went on. They tried to assure us that science was making new discoveries every day. But, at that moment, science didn't matter. This was my daughter. Tiny, vulnerable, and now facing a lifelong disease.
I had so many thoughts as we drove home that day. I was angry. Why her? Why me? Why us? I laid Ali down for her nap and finally had some quiet time to be alone. I wasn't just angry, I was heartbroken. Tears overwhelmed me, and I had no idea how I was going to be the source of strength she needed me to be as her mother. None of this was part of the plan, and I couldn't understand why it was happening. I had pictured her birthday parties, her graduation, her wedding, and all things beautiful in a daughter's life. Would they all still happen? So many doubts.
But, something else came to me in those moments. A thought. A small voice.
If I was a victim, she would be a victim. I had to be brave enough to stand up, for all of us. And it was in this moment I had to choose, and no one else could do it for me.
Was I going to be a victim of this diagnosis or was I going to stand up, fight with everything I have, and give my daughter an amazing life? I had to be a warrior so that she could be a warrior. And this was the first true hope I had. I would raise her to know that she wasn't her diagnosis. It was something she had, not something she was.
Over the years, she's had many struggles. Frequent clinic appointments, blood work, scans, struggles to gain weight, stomach pains, shortness of breath, and exhaustion have always been tough as a mother to watch. Time management when it came to her treatments and learning to take care of herself as she got older was a challenge as well.
But, as hard as it's been, somewhere along the way I began to think of CF as a gift. From the beginning, she knew the value of life. The value of adversity. She had a fight in her that was unmatched. The little pains of life didn't affect her as much as her peers. She often thought bigger and craved to be an inspiration to others. And well, the lessons I've learned as her mom -- that's for another day. Some are gut-wrenching, and some beautiful.
We have been able to serve and give back to the community. We have seen other CF friends fight and lose, all the while knowing life is a gift none of us are guaranteed. I would take the CF struggles out of her life if I could, but I would never take the lessons.
Today, Ali is 17. She's studying to be a professional dancer and plans to attend school in New York City next fall. No matter the circumstance or the diagnosis, still dream big. Your diagnosis is never your destiny.
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Nicole K. Montez
Mother of a child with CF
Nicole is a mother to two girls, who resides in Parker, Colo. Her oldest daughter, Ali, was born with cystic fibrosis. A business graduate of Colorado State University, she now works from home as an entrepreneur, mentor, speaker, and recently published author. Her best-selling book, “Raising Ali,” is available on Amazon and benefits the CF Foundation. She often contributes to the annual CF gala in Denver, and her family helped organize and initiate the annual CF Climb at Mile High Stadium. You can learn more about Nicole at her website, nicolekmontez.com, or follow her on Facebook and 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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