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.
I had to stop taking Orkambi® because my body couldn't handle it. I'm having a different -- better -- experience with Symdeko™.
July 20, 2018
I Can Laugh About My Most Embarrassing CF Moment
The Path Between Hope and Pessimism
“Right now, people with CF are skydiving without parachutes -- once the disease hits its breaking point (and this happens at a different age for everybody), our plummets are fast and unavoidable. Orkambi® is our parachute. Orkambi® can slow us down. Orkambi® can save us.”
This excerpt is from my personal blog. It was July 2, 2015, I was 19 years old, and the post was titled “Best Day EVER!”
I can't deny that July 2 was, for a huge portion of the cystic fibrosis community, pretty much the best day ever. Finally, a genetic therapy option for the mutation that the majority of people with CF have, F508del! And, how lucky I was to be included
in that majority, as a double delta?!
After a few months of insurance rigamarole, I finally began taking Orkambi® in February 2016. I can clearly remember the morning of my first dose. Closing my eyes now, in high-definition, I see myself swallowing the purple tablet, taking a
tear-filled selfie (#ForTheInstagram), and going downstairs to my apartment building's gym, as I did every morning. I biked seven easy miles that day. It was the last time I did.
Within a few hours, I was back upstairs in my apartment, pulling at my tank top and wheezing. Signs of an exacerbation had come out of nowhere, but that didn't make any sense. I knew they had to have been side effects -- I had been warned for months.
Headaches, tightness, shortness of breath.
I made it two weeks on Orkambi® before I had to give up.
I was devastated. Ten days on Orkambi® had deconditioned my lungs to the point where walking across campus to go to class was a workout in itself. The daily morning runs I had been enjoying for the past seven months seemed gone forever.
Orkambi® was no longer an option for me and I couldn't help but feel like I had been cheated. My parachute had huge, gaping holes in it, and I was falling faster than I ever was before. But the Cystic Fibrosis Foundation, along with
my family, friends, and fellow CFers, encouraged me to remain committed to my optimism, for the new drugs will come, we chanted. And, they will be even better. So, I enrolled in pulmonary rehabilitation, ate as much food as I could, and I waited.
On February 12, 2018, Symdeko™ came, and words fail to describe how much better it is for me!
I have been on Symdeko™ for roughly three months now. I was *this* close to being able to say that I haven't been in the hospital at all during that time, but I was admitted six days ago for an exacerbation I couldn't seem to shake. But, it's okay! Hear
So. Yeah. Do you see why I'm not too upset with being in the hospital right now? This is exactly the kind of thing I was hoping for when I first saw that one study showed Symdeko™ decreased the chance of pulmonary exacerbation by 35 percent! I'm beyond
The other huge thing I've noticed with Symdeko™ is that my weight is stable. I haven't gained a significant or even a noticeable amount of weight since I started the drug, but it didn't drop every time I got a sniffle or took too big of a dump (#HonestyHour).
For the past three months, I've stayed at a cool 120 pounds, which is genuinely so encouraging for me.
It's been two tough years of fluctuation, body image issues, hair loss, vomiting, and even one episode where I lost consciousness, cut my head, and seized, so I am happy to be here. And yes, I've remained proudly vegan!
And finally, my lungs. I was hesitant to talk about how my lungs felt on Symdeko™, initially, because I didn't want to jinx the magic. But once no side effects crept up on me (and I really mean none -- still, to this day), I felt safe enough to tell my
boyfriend the following:
It feels like my lungs have gone back in time.
Not by much. Just by a couple of years. It's hard to explain, but it feels as if a few inches of space in my chest have somehow been excavated, rediscovered, and offered back to me again. An organ donation of my own lungs. A parachute, still with holes, but with some patches, as well.
Adult with CF
Hannah is a student with cystic fibrosis at the University of Michigan, where she majors in creative writing and minors in digital studies. When she isn't writing, she likes to walk dogs -- her dog, someone else's dog, it doesn't matter -- and cook vegan food. To see more from her, check out her blog, YouTube channel, and Facebook page, or follow @AHealthyHan on Instagram and Twitter.
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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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