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.
Ever since I graduated high school, I've dreaded the day I would have to transition off of my parents' health insurance plan. But, by using some important resources, I discovered that getting my own health insurance wasn't as scary as I thought.
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Today is the day I have been dreading … the day that I've always felt like the world was going to end. Today is the day that I transitioned off of my parents' health insurance.
But, let's back up a little ...
When I was a senior in high school, I knew that I would have to choose what I was going to do with the rest of my life. I have never been a planner -- not because of my cystic fibrosis or anything, it's just not my personality. I had a great passion for
music, but I also had people left and right guiding me away from performance because it wasn't a very stable career path.
There's this whole big thing about following your dreams and not letting your disease control your life and blah, blah, blah. I would not have made it in the music performance field, though. I know that now and I have made my peace with it. I also knew
I DID NOT want to teach music. My patience is nowhere near teaching level.
But, one thing I did know was that I HAD to go to college. The rule was that if I wasn't a full-time student, then I couldn't be on my parents' health
insurance. And then where would I be? So, with the guidance of my wonderful teachers I decided to major in music business. This path would allow me to follow my passion of music, but give myself some security. So, off I went.
Fast forward a couple of years to my second year of college. I was doing alright in school. However, I was "burning the candles at both ends" as my mom would love to say. I was getting pretty sick and my health was taking a toll. I had no idea what I
was going to do because I knew I couldn't keep going at this rate.
Luckily for me, however, this was right around the time when the rules of insurance changed to allow children to stay on their parents' insurance plans until the age of 26 (instead of 24) without constraints. This meant that I didn't have to be a full-time
student. I ended up dropping down to part-time for two semesters and getting back on track. A few more years went by, and I eventually ended up graduating college after taking only one semester off, and the rest full-time.
Now, we get to the real world … where I had to find a full-time job with good benefits. That's all fine and dandy, but I was already 24 (as opposed to 22) by the time I finished college. That left me with less than two years to network, find a job, and
establish myself before going off of my parents' insurance. It's something that freaked me out for quite a while.
Eventually, I landed in my perfect professional space: a local restaurant with the most caring people I have ever met, working with local musicians, and doing what I love. Restaurant management is not a glamorous job, but I am happy with what I'm doing.
Having a career that I enjoy is much more important to me than having one that pays a lot. (We can chat about that in another post, though.) But, that's when my fear started coming from a place of the unknown and financial stability. Instead of worrying
about having a job that would provide the benefits I so desperately needed to live, I started worrying about the transition.
Fortunately, I had help. My social worker from my CF care team took the time to look over each detail of my parents' existing insurance benefits and explain them to me. A wonderful woman
at Cystic Fibrosis Foundation Compass spent an entire hour on the phone with me making sure
I chose the best plan for my needs. Every technician I spoke with at my various pharmacies patiently answered my plethora of random questions. My mom taught me several of her tips and tricks that she's learned throughout the years of managing my health.
My boss and our insurance representatives kept me informed on the progress of my insurance application. And finally, my fiancé supported me through months of reworking our budget and letting me fret over every penny to make sure my mind was at ease.
After spending the better part of four years worrying about transitioning off of my parents' health insurance, it turns out that the day I feared was just another day.
The world didn't end.
I have now been on my own insurance for three months. My CF care team has continued to put all of their efforts into making sure that I am comfortable and educated, even after I have technically transitioned. I have continued to utilize CF Foundation Compass to talk about assistance programs.
The fears that I had leading up to this moment were completely justified. CF is completely unpredictable and growing up is hard. But, there are resources out there; use them.
Young adult with CF
Wendy is a young adult with CF who is finding her way in the world. She is a passionate writer and advocate for CF awareness, and is currently training her service dog, Finn, for when she needs a little extra support throughout the day. In her free time, Wendy enjoys music, traveling, and reading, and credits her CF for giving her more drive to love life and all it has to offer. Follow Wendy on her blog, The Living, Breathing Wendy.
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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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