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.
Being in touch with your emotions can be considered a negative when you're a guy. For me, it's been a tremendous help in dealing with my cystic fibrosis and the loss of my sister to this disease.
May 1, 2019
Diagnosed With CF at 47
How One Blood Draw Helped Us Grow as Parents
To me, one of the most important parts of life is human connection. We can have the best job, excellent health, plenty of money, or whatever else; but if you don't have vibrant, loving relationships, it's impossible to feel the highest levels of joy.
Developing these relationships with other people requires both participants to be vulnerable and compassionate. This isn't necessarily true for everybody, but for most heterosexual men, we're socialized to associate vulnerability and compassion -- especially
shared with other men -- with being effeminate or homosexual. On top of this toxic masculinity, we're led to believe that being open about our emotions, our hurt feelings, or our weaknesses, is also unmanly. For many adult men, unlearning this deeply
embedded conditioning is extremely difficult and requires willingness to go against what you've been taught for years, sometimes decades.
Not only are these notions harmful for our mental health, toxic masculinity also robs men of the types of human connections with others that help us be our best for ourselves and for the people
that we love.
I have made the choice to be vulnerable about my life and my emotions, and I think it makes me a better writer when I'm more honest. I've been humbled by some pretty amazing comments about how my openness has affected people, which encourages me to continue
Being open about my life with CF means that vulnerability is part of it. I've discussed (jokingly and seriously) my life expectancy with friends, a discussion that inevitably brings people closer. I've noticed that my ability -- eh, tendency is probably
the better word -- to discuss heavy topics opens up the possibility for us to talk about our emotions, fears, and concerns.
Writing about my feelings has helped me thoroughly develop my communication skills, but I recognize this isn't true for all men. Because of our lifelong conditioning, if we don't hone the language required to talk about our emotions, it's difficult to
For many men, I'd argue it's not as hard to have vulnerable, platonic relationships with women. I think that's because the traditional (but becoming more obsolete, which I think is good) parental roles are that the father is the stoic breadwinner, whereas
the mother is the emotional caretaker. A man's spouse, mother, or female friends typically carry the burden of his emotional needs. Learning how to deal with our own feelings and communicating with other men in our lives is the right thing to do for
ourselves, our friends, and our loved ones, especially the women who have been there for us.
I've had some wins lately, but I will forever remember 2018 as a terrible year -- the year we lost my 29-year-old sister, Alyssa, to CF and then started grieving her. Everything that has happened this year is viewed with the grim reality of my sister's
fate in the background. Throughout my own life with CF and my sister's declining health I have had resounding support from many people. I've needed every ounce of it.
When I wondered what life would be like without my sister, I suddenly worried about becoming an only child. The truth is, blood isn't the only thing that can make people close like siblings. The friendships I've developed with my guys feel like brotherhoods.
The love I have for them is fundamentally part of who I am. I would not be here without having their support, whether it was having a shoulder to cry on, listening to me vent over a beer or coffee late at night, or being there for me in moments when
I needed to get my mind off things and just laugh and live life. I've never been afraid to express my love for them, and I hope I say it enough to them because I never want people to go without knowing that they mean the world to me.
I don't think it's possible for a relationship to ever be more than an “acquaintanceship” if you never broach serious issues. These relationships with my male friends have allowed me to thoroughly process the emotions that come with having CF and losing
Everybody deals with traumatic events differently, and that's OK. What isn't OK is repressing the emotions that are part of being human. I also want to make something clear: Viewing or deriding vulnerable men as effeminate or homosexual is a tired, homophobic
The blunt reality is that emotions are neither masculine nor feminine; emotions are human. Men, you don't have to feel compelled to share your emotions with everybody. There are relationships we all have where discussing our feelings just isn't that big
a part of it. That's fine. But alienating those who are honest about their emotions or labeling emotions in a way that discourages people from sharing them is unacceptable.
We are better people when we are honest about our feelings; it helps us empathize with others. It nurtures relationships. It brings more vibrancy and joy in life. And lastly, it makes the world a better place for all of us.
Men, it's time we take responsibility and get better about how we handle our emotions.
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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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