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.
Cystic fibrosis forced me to drop out of high school. After earning my GED, I'm in college and more determined -- than ever -- to finish.
March 14, 2018
Why Mental Health Mattered When It Came to My Lung Transplant Journey
How One Conversation Led Me to Being More Intentional About My Life
I woke up every morning dreading having to go to school. This dread was probably 70 percent not feeling well, 20 percent fearing that some kid in my math class would sneeze and
I'd end up in the hospital on antibiotics a week later, and 10 percent the everyday teenager's attitude toward school. But, this constant cycle began
to take its toll and I ended up trying online school through the school I was attending.
I worked with a school social worker and the guidance counselors to come up with a plan on how to stay a full-time high-school student while also balancing my health. This plan worked -- but only for a few months. I can't quite recall all the things that
happened that led to it, but, after a few months of online school, I technically “dropped out.” I don't like to use that term, though. I like to call it “taking an extra-long break.” And, it was an extra-long break; it lasted from 2013 to 2016.
I had reasons. It wasn't like I just said “Eh, school's for losers. I don't need an education.” I wasn't healthy. I was trying to balance cystic fibrosis and doing well in school and both were making my health decline in every aspect. Truth be told, I
was scared that if I didn't focus just on my health, my life expectancy was going to drop significantly.
I remember thinking, "If I continue to push myself too hard to graduate from high school so I can go to college like everyone wants me to, I'm not going to even make it to college."
My brother, Stewart, graduated college in May of 2016. I spent graduation weekend with him and his friends; that's when the switch in my brain flipped. I realized that I needed to prove to myself that I could do it and that CF wasn't going to hold me
back. I decided to pursue a General Equivalency Diploma (GED). After spending months studying -- and waiting a bit too long due to fear -- I took the exam.
I passed on my first attempt with a high enough score on the science portion to count as a college credit. (I thank my extensive medical knowledge due to CF and “Grey's Anatomy” marathons.) I felt so accomplished. It was the first time in a very long
while that I was proud of myself. I was a point above my disease now. But, I wasn't done yet.
I decided I would dip my toe into the college pool. I want to learn more. I want to continue to have the upper hand against CF, in my mind anyway. I was finally healthy and happy and I thought now was as great a time as any.
It was just my luck that hours after I was officially enrolled in college classes, my doctor called to tell me I had cultured positive for Mycobacterium,
something that, after reading about it, left me very frustrated and scared. I had to make light of the situation somehow, so naturally, I renamed the mycobacterium “Voldemort."
I had come so close, I wasn't going to let this set me back again. Just two months later, I moved to Raleigh and started college. Now, I'm not going to lie to you; the past few months CF-wise, have hit me hard. I haven't felt well, I've been admitted
to the hospital twice in four months, I've been diagnosed with CF-related diabetes -- along with other things -- and the recovery time
of my last admission, which ended just four days before I wrote this, took me five times as long to reach a number that is even close to my baseline lung function.
The thought that maybe it's not worth it to be in college has definitely crossed my mind a few times. And, I know that it will cross my mind a few hundred times more before I reach the end of my college journey.
But, I'm pushing through it. I'm finally finding the perfect place on the scale to balance my life with CF and everything else. Every few days the scale begins to lean one way and I figure out where to move to balance it evenly so that I can continue
to be a full-time college student and a full-time CFer.
Young adult with CF
Abigail was diagnosed with cystic fibrosis at almost 3 months old. She has lived in Charlotte, N.C. most of her life and recently moved to Raleigh, N.C. to attend school. When she isn't hooked up to her vest or nebulizers, she enjoys knitting, sewing, baking, and watching movies with a big bowl of buttery and extra salty popcorn. Abigail has a CF mini series on Odyssey, in which she chronicles daily life with CF and things she has learned or would like to share with others about the disease. You can also follow her on Twitter @abbychansen.
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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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