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 decided that I wanted to live on the Caribbean island that I grew up on. Although it takes some planning and work, I'm thriving there.
October 17, 2019
How My Drug-Resistant Infection Led Me to Help Steer Infection Research
Sharing My Story on Social Media Without Oversharing My Son’s CF Journey
I have always been one to push the boundaries of what someone with cystic fibrosis is capable of doing. So, it wasn't a surprise when I came to clinic and started the conversation with, “I am moving to St. Thomas in the Caribbean.” Since that bold move,
the messages I have received have ranged from “Wow, I love what you are doing” to “Have you fully lost your marbles, Chelsea?!” I never claimed to have all my marbles to begin with, but I'm here to share how growing up and dealing with CF actually
prepared me to live on an island.
A little back-story: I grew up on St. Thomas in the U.S. Virgin Islands. For the better part of my childhood, I assumed everyone ran on the beach after school collecting seashells. My point being, as crazy as this move was, it wasn't the craziest thing
for me to return “home.” So, the idea of living as a CFer on an island wasn't completely foreign to me.
I'm sure the question that first pops into your mind when I say I live in the Virgin Islands and have CF may be “How?!” There is no CF clinic on a 31-square-mile island, but I am extremely thankful to have an amazing clinic team at Johns Hopkins who sees the benefit in not only staying healthy, but also living my life to the fullest. I spent many clinic visits and phone calls having hard conversations with my CF care team, discussing how to make this work and “what if” scenarios
before I moved so that I would thrive on island.
I receive my medications via mail through my specialty pharmacy, as well as from my hospital's pharmacy. I do my treatments the same way I have for years with all of my equipment with me. I am thankful to have family that lives only an hour from Hopkins, so -- every three months -- I fly to see my dad, friends, and my CF family at the clinic.
And, if I can feel an exacerbation is coming, I return earlier to get checked out. I essentially have my entire CF team on speed dial in case anything begins to feel off. And, if something does happen where I need to get off the island ASAP, we have
emergency transportation at the ready. So, the short answer to “how do I live on an island and have CF?” is plan, plan, plan, and then plan some more!! Thankfully, the salt air has done me well and I have not had to go back to clinic, aside from planned
visits, thus far.
Island life to most mainlanders seems like a 24/7 vacation, and it is a lot of the time. Looking at the beautiful beaches, crystal clear water, views for days that never get old, and fun in the sun may have you planning your own escape, too. Beyond the
beauty, this amazing island is also a running tally of Murphy's law examples. There are power outages every other day, cistern water leaks, roads with potholes to China, stores so out-of-date we still have a Kmart, being so isolated an Amazon delivery
date is simply “eventually,” hurricanes, and work that never seems to end. I'm not complaining, simply shedding the light onto the part that most vacationers never deal with. It is certainly not for the faint of heart. And that's exactly why I fit
Living with CF has instilled a never-give-up mentality in me that has allowed for a rather seamless transition back to island living. CF can be the most unpredictable monster out there, so it's only natural to learn how to roll with the punches. CF forces
you to not only think about Plans A and B, but Plan A through Plan X all at once. Having multiple plans comes in handy when you have to figure out how to get medications to an island in the Caribbean and then how to do those meds if the power goes
out that day. With CF and island life alike, you have to take things day by day. How am I feeling today? Is there a storm coming today? With both questions, you must adapt a level of patience beyond normal. “Let me call the pharmacy, again, to see
if my medication is ready. Oh, the ferry is running on island time this morning? No problem!"
In a strange way, this island feels like the exact place I should be. I am forced to constantly stay active by working around the house, teaching yoga, swimming, or snorkeling. I live in -- quite literally -- a hypertonic saline bubble, which my
lungs love. I am using the skills that I developed by living with a life-threatening disease to live peacefully in a place I love. More than anything, CF has shown me that just because something is hard, it isn't necessarily unachievable. Living
every single day with CF is hard: every treatment, every reminder of what the future could hold, every cough that makes you think, “Is this an exacerbation cough or a regular cough?” Living with CF makes living on the Island -- with all of its quirks,
adjustments, and foibles -- seem like a walk in the park.
CF, as many of us know, instills a distinctive understanding of life from a young age: Our time on earth is limited. Though this is true for everyone, CF slaps you in the face with this reality long before the rest of the world. For me, this slap in the
face caused me to reevaluate everything, who I am, what I want, and what brings me happiness. It was this reevaluation and deep understanding that I am not promised tomorrow that drove me back to the island.
I knew I wanted to make the most of my life. I want to follow my dreams and use the courage that CF has given me to take the road less traveled and live an unbelievably beautiful (still slightly crazy) life. My dad has always made the joke that I am a
“fun sponge” because I have to suck up all the fun from every experience I have. I guess you can also call me a “life sponge,” trying to suck every experience and moment out of this life I was given. So, from this sponge to you, follow those dreams.
Nothing is ever too crazy!
Adult with CF
Chelsea was struck with wanderlust, a go-getter with a zest for life who has never let CF stop her. Chelsea graduated college cum laude with a BA in psychology and has channeled that passion for helping others into everything she does. You can
find her teaching yoga, sailing, flying to a new country, or showing those around her that cystic fibrosis does not define what she is capable of. Chelsea works very closely with the amazing research doctors at Johns Hopkins helping to raise funds
for CF research. You can follow her journey and adventures living with CF on Instagram or Facebook.
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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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