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.
As both a researcher and a person with cystic fibrosis, it is an amazing experience to watch cells with rare CF mutations respond to drugs in the lab. Knowing the scientific basis for my treatments not only gives me a sense of control, but it encourages me to do my treatments.
November 29, 2017
Why I Refuse to Let My Lung Function Define My Life
How I Coordinate My Care With 2 Different CF Clinics
One of my most sought-after goals has always been to make a positive contribution to the CF community. For the last year and three months, I feel confident that I've done just that by working in the research lab of Dr. J.P. Clancy at Cincinnati Children's
Hospital. My education and experience in the lab has made my approach to my disease much more evidence-based and meticulous.
Our lab is trying to make precision CF medicine ubiquitous. We specifically want to determine, to the best of our ability, if the cells of people with less common
mutations respond to compounds similar to the approved cystic fibrosis transmembrane conductance regulator (CFTR) modulators, Orkambi® and Kalydeco®. My role in the lab is to analyze and measure how their cells respond.
Our lab uses two model systems to corroborate which drugs will work best: “monolayers” and “spheroids.” Each model system is a good representation of how the body works, so it's important to use both systems because a patient's cells may work better in
one than the other.
We are able to grow patients' cells into “monolayers” in laboratory flasks after we collect them by brushing the inside of their noses with a small wire brush. Working with an instrument called an Ussing chamber, we can measure if chloride channel transport
is improved when we treat the cells with varying modulators.
In addition, we separately expand the cells into individual spheroids (or sphere-like shapes) and treat them with the same varying modulators. Both strategies are used to corroborate if a drug will work well for the patient's specific mutation. You
can see which spheroids respond well to the modulators because the cells swell as they take in more chloride from outside the cell. I am actually witnessing the modulators improving CFTR protein function because the chloride transport is
improved. It's both humbling and inspiring.
In my opinion, one of the most crucial aspects of CF care from a patient perspective is a feeling of personal control and responsibility. For CF care, it's of utmost importance to stick with our treatments,
to exercise, and to be educated on our condition.
At the end of the day -- and sadly -- we only have some control over our disease progression. We can be sanitary and do all our treatments, yet a nasty infection can set us back more than we'd like.
But one part of CF care that is completely within our control is our understanding of the condition. Having some understanding of why things are necessary in our care can allow us that feeling of having control; to feel “normal” and responsible
for our lives. That feeling of normalcy is what helps me stick to my treatments and have better mental health as well.
My education and lab experience have only furthered this belief in my mind. Our lab is partially funded by the Cystic Fibrosis Foundation, so our work is supported by the fundraising done by volunteers
-- including my family and me -- over the last couple of decades. This part of the experience helps to confirm my passion for advocacy within the CF Foundation.
I strongly believe in the importance of doing what we can, as humans, to take matters into our own hands. As a person with a chronic disease, having a healthy mindset to deal with the unforeseen mental burdens of life with CF is important. Working in a CF lab has been one of the best experiences of my life because it gives me an insight into the intertwined workings of the scientific and clinical aspects of CF
It's also been a uniquely uplifting experience because I am able to provide the doctors and researchers in my lab an adult CF patient's perspective on life with CF. I am grateful for the opportunity to work in the lab, and I'm also grateful to be involved
with the Greater Cincinnati Chapter of the CF Foundation, as these both help to give me the chance to feel fulfilled and contribute to the cause that's so near and dear to my heart.
Adult with CF
Tré earned a bachelor’s degree in biochemistry with minors in mathematics and biology at the University of Kentucky in 2016. He first worked in a CF lab during his undergraduate career at UK and in Dr. J.P. Clancy’s lab at Cincinnati Children’s Hospital Medical Center after graduation. He is a co-author of the article “Detection of CFTR function and modulation in primary human nasal cell spheroids” in the Journal of Cystic Fibrosis. He frequently exercises to stay in shape and writes at trelarosa.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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