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.
Navigating the intersection of transgender health care and cystic fibrosis care has had its ups and downs, but I've become an effective self-advocate and intermediary between my two health care teams.
May 4, 2020
From Mist Tents to Trikafta
Tips for Surviving Home Isolation From a Person With CF
Cystic fibrosis doesn't define me, but I must admit it does impact most of my life in some way or another.
When I started talking to my care team about transitioning a couple of years ago, it was new territory for all of us. The fact is, there isn't a lot of research on long-term effects of transgender health care, never
mind where that intersects with my CF care. Each time I ask my team a question, it feels like a new research project. For a long time, I searched the internet for other trans CF folks but always came up empty. That's the reason I'm writing this blog.
I refuse to believe that there aren't plenty of people with similar enough questions to those that I had!
My first hurdle was with chest binding affecting my breathing. CF primarily affects my respiratory system rather than my digestive system and
as with everything, this has certain pros and cons. When I first brought up this topic a few years ago, no one had an answer about whether chest binding would be particularly dangerous or harmful. I actually got a few responses that were either wrong
or would be potentially damaging long term.
As difficult as it was to figure out, it was the beginning of a very important dialogue between me and my care team. Now I'm confident that
I can speak freely with them. Even if they don't know the answer to a question or issue, they are upfront about it, and we find answers together. Likewise, they know that they can ask me questions, whether about my experience with transition, or how
I navigate the world using gender-neutral pronouns. I find that as long as I'm comfortable answering, it's typically in my best interest to do so -- if not for my own health and experience, then for someone else's benefit.
I've been surprised with how often my CF care and transgender health care overlap.
Sometimes it's positive and other times, not so much. One of my earliest examples is learning how to give myself shots. There was approximately a year of time between beginning talks about transition and starting to take hormones. Within this year or
so, I was hospitalized a few times, which meant taking blood thinner shots. I took this opportunity to finally start doing them on my own, so that I was more prepared to do my hormone injections at home.
My favorite overlap however has to do with food. I've often said that food is my number one love in this world. As a CF patient, I'm always keeping an eye on my calorie intake and making sure I'm eating plenty of protein. After starting hormones, it was like having “second puberty.” With this comes an increased appetite and energy levels. My hormones were making me want to eat and exercise more! Both these things can only benefit all aspects of my health. In other words, bring on second breakfast!
Although it's great that I have managed to improve the communication between me and my CF care team, there is another aspect to this tangled system. I have had to get increasingly better at being a professional self-advocator as well as a competent intermediary
between my CF team and my trans health team. This can be frustrating at times, but until all the different medical chart programs can talk to each other, it's a necessity. Unfortunately, there is a lot of, “he said, she said, they said,'' involved
with this -- usually about medications, drug interactions, and lab tests and results. Sometimes I wish that my doctors would just message each other, but I'm aware that this is more of a pipe dream rather than a practical plan. When you get down to
it, my CF team doesn't understand queer and trans issues, and my trans team doesn't fully understand my cystic fibrosis needs.
For anyone that feels like this resonated with them, rest assured you are not alone.
I've come to think of myself and the precious few other queer folks I've connected with online as a community within a community.
Like all other CF-related peer communication, the internet is a blessing. There are Facebook groups and threads that can be found with enough digging and perseverance. We've all got each other's backs, and we will have yours too. See you on the internet!
Adult with CF
Rowan was diagnosed with cystic fibrosis at age 7. Today they live in Boston with their two turtles. Although they work as an architect, in their free time you’ll find Rowan either traveling abroad or playing games with friends. They are currently over
halfway to completing their goal of visiting all seven continents. Over the past 10 years, they have given talks to employees at different pharmaceutical companies and volunteered their time on different panels at Brigham and Women’s and Boston Children’s
hospitals. If you would like to see more of Rowan’s story, they post their travels on Instagram (@_rowanaway).
Share this Post
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.
Follow Us On
Insurance, financial, legal, and other issues. A dedicated, knowledgeable CF Foundation Compass case manager is ready to work with you one-on-one.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails