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 I was growing up, having a positive cystic fibrosis diagnosis did not automatically mean that I got the care and treatments I needed. It wasn't until my 22nd birthday, when I was in poor health, that I decided I needed to get healthy and speak out for myself.
October 26, 2017
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Sometimes a fork in the road leads us right to where we belong. In my CF story, my fork in the road was deciding whether to take charge of my health. Do I get involved or do I ignore it?
For most of my childhood, I didn't get the care that I needed. At 3 months old, I was diagnosed with failure to thrive and then diagnosed with CF after two sweat tests -- the second confirming the diagnosis. My parents, however, denied my sweat test results since the first one was negative. They didn't think the doctors knew what they were talking about. So for most of my life I was only treated with pancreatic enzymes to help me gain weight.
Up until high school, my family sheltered me from sports and most events outside of family activities. In part, this was because my family thought that since I had trouble breathing, I shouldn't be active. Then in high school, I had 10 gallstones that caused a gallbladder attack and then removal of my gallbladder and finding out that I have cirrhosis of the liver. After graduating, I wanted independence. That led me to move out of the house, get engaged, marry young, and then divorce by the age of 21. But I realized I was having trouble keeping up with my friends; I was always coughing and people thought I was sick.
So I decided that at 22 years old, and 87 pounds, it was time to take charge of my life and my health.
I then started my research on what having cystic fibrosis really meant for me. I learned I needed to get involved in my own care. I called adult CF clinics nearby and within days, I had an appointment with Northwestern Memorial Hospital in Chicago. By getting the proper care and taking the right medications, I found myself with more energy and finally gaining weight. I felt healthier. Before I knew it, it was 11 years later. I've held jobs in retail, from seasonal to full-time management positions. I started Orkambi two years ago and it changed my life. I am no longer 87 pounds and I not only feel healthier, but I have become an active advocate for myself and others with CF and other rare diseases.
I took another step and participated in my local Great Strides walk six years ago and then got more involved with CF through writing and conferences. Having these experiences made me realize I was not alone, that every story is different and I want to help others.
As I learned more and more about myself, I found a true passion for advocating for my health. I've been able to do this since I got involved with Community Voice. Community Voice is a group that provides opportunities to get involved with and influence programs for the CF community by completing surveys, participating in focus groups, and joining working groups.
Community Voice has given me an opportunity to share my story and make my opinions feel important.
By joining Community Voice, I was able to get involved in planning projects such as the Patient and Family Registry Advisory Board, Insight CF, CF MiniCon: Young Adult, and BreatheCon. Community Voice made me feel my ideas were important, and it's been great to meet and work with so many amazing people connected to CF on these efforts.
Being a member of Community Voice has encouraged me to get involved in other projects to benefit people with CF -- and beyond. In the last year, I was appointed by the governor of Illinois to the Rare Disease Commission. As a member, I help leaders in Illinois see that rare disease patients need to be heard. Community Voice helped me open up about my story and taught me how to speak up. I learned that I am meant to raise awareness and help others gain the courage to do so as well. Because if we don't speak out, who will?
Like I said, sometimes a fork in the road leads us right where we belong. Making the decision to get involved in my health and the well-being of others with CF has given me opportunities beyond what I had imagined possible. I'm happy I chose -- and continue to choose -- to make my voice heard.
If you want to join Maria in making your voice heard, join Community Voice.
Adult with CF
Maria was diagnosed with CF at 6 months of age. She is a married 33-year-old stepmom of two teenage boys. She has been an advocate for her CF health since she found her CF clinic when she was 22. She is doing this by serving on the Illinois Rare Disease Outreach Commission and participating in programs and groups like Community Voice, Insight CF, and the Adult Advisory Council. Maria has studied events and hospitality management and wedding planning, and self-published a poetry book, “Sincerely Yours,” in 2012. She also enjoys paper crafting for her online shop Cysta Crafts.
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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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