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.
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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.
I could fill a book with all the things I learned at the virtual North American Cystic Fibrosis Conference this year, but I am especially glad that there was a focus on diversity, gender health, and sex-based differences in CF.
January 14, 2021
What I Didn’t Expect From Trikafta
Managing Other Health Conditions With CF
I was honored to be able to virtually attend this year's North American Cystic Fibrosis Conference (NACFC). I am an adult with CF and very active in the CF community.
I also am a patient advocate for the Therapeutics Development Network's Women's Health Research Working Group and a working member
of a couple other research groups. I lend a patient's perspective to help guide and inform clinicians on the gaps in CF -- particularly women's -- care.
This is why I was so excited that this year's theme of NACFC seemed to be the “year of misfit toys.” Don't get me wrong.
This is a very positive direction for CF care overall -- the focus has shifted to new ways of approaching old ideas, bringing the smaller niche and understudied areas of CF care to the forefront, and trying unique ideas to develop better care.
As the CF population lives well into adulthood, we are finding that areas of care that seem glaringly obvious have been understudied because they weren't issues when the average life expectancy was under the age of 18.
Sessions on gene editing addressed the 7% of the CF population who cannot benefit from modulators. There was a new focus on tailoring care and medications to the individual versus following a set of standard guidelines. I saw a movement to examine understudied
pathogens such as nontuberculous mycobacteria and Aspergillus.
Presentations on the roles of nutrition and CF-related diabetes in long-term
health and how to better manage or detect abnormalities in these areas offered refreshing new takes on old areas of study. It was encouraging to see the psychological toll of CF -- both to
the individual and families -- being talked about and made to feel less taboo. Even a current niche -- addressing COVID-19 and its impacts on the CF population
-- was brought up during this event.
One other little section that caught my attention was the mention of an upcoming novel study called HERO-2 that will be the first, patient, home-reported outcome study ever. It just shows the innovative ways clinicians are approaching care and how the
CF community will lend a hand in guiding better care practices through tracking day-to-day trends. The list of exciting advances on the horizon goes on and on.
I could write a book on all that I learned from this event, but the sessions that I really want to focus on are the sessions around diversity, gender health, and sex-based differences in CF progression and care. CF care teams are recognizing that many
patients come to them with issues outside of their normal focus, and being able to openly bring these sensitive topics up during visits and recognize any implicit biases could greatly improve and guide future care. I found the sessions on addressing
LGBTQ issues in clinic and reevaluating the representation of minority families to be particularly eye opening. Just being able to state that clinicians are aware of the issues and active studies are being conducted to understand these communities
are huge steps in the right direction for quality care.
Females are a well-represented, but very understudied population in the CF community. In fairness, most women did not -- until fairly recently -- have the chance to start families, experience menopause, or worry about cyclic hormonal impacts on their
health. So, there is a large gap in the research behind this topic. Not to mention CF doctors do not regularly practice gynecology or obstetrics, so it is not in their wheelhouse. But with most patients using their CF team as their primary care physician,
women's health is something that needs to be brought up or a plan needs to be made to source it out. Even something as simple as urinary incontinence is an issue many women with CF suffer through because they are too embarrassed to bring it up, or
they simply don't know it's abnormal.
Studies are being done to find better treatments for this problem, and there is a push to make this line of questioning more mainstream. Now in the age of highly effective modulators such as Trikafta®,
safety during pregnancy and efficacy of birth control are front and center for many women with CF.
I love that there are clinicians out there trying to close the information gap and supporting research for better reproductive health in the CF community.
There are websites being built to help women with CF decide which birth control option would be best to use. There are also new studies coming out like MAYFLOWERS that will be a prospective observational study on the effects of pregnancy in women with
CF. I am hopeful that women with CF in the future will not have to flounder through uncharted territory like I did for my pregnancies.
As all these topics become more mainstream, I will be more confident to bring them up with my physicians. Based on what I saw through this NACFC event, I think the misfit niches, populations, and studies will become just part of the main conversation
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Jacqui was diagnosed with cystic fibrosis at birth. She has participated in numerous clinical trials to further advance CF care. Jacqui is serving as a patient advocate on the CF Women’s Health Research Working Group and as a clinical research community
reviewer. You can find Jacqui in her kitchen, cooking for her husband and two boys or walking along the beach and trails near her home in southern California. She can be reached at email@example.com.
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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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