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.
Reaching new milestones in my life as a 24-year-old with cystic fibrosis -- graduating college, starting my career -- has been rewarding, but it's never been easy. The opportunity to share my experiences and learn from others is why I'm thrilled to help people with CF connect at CF MiniCon: Young Adult on July 22.
July 17, 2017
How I Came to Love My Scars, My Body, and Myself
Celebrating My 30th Birthday With a 24-Hour Fitness Challenge
Being a young adult is exciting, and it means new responsibilities and new opportunities. But, it also means you face more challenges.
In recent years, I've graduated high school and college and moved away from my family into the city with one of my best friends. Becoming more independent has meant keeping up with my treatments and taking care of myself, which took some getting used to.
Currently, I'm at my first full-time job as a web developer -- a position in which I'm always learning, collaborating with clients across industries, and seeing projects through from beginning to end. Now, I'm thinking about going to grad school to focus on technology and health care, two things I'm passionate about. And I can't wait to open these new chapters of my life.
But not all of this has come easy. While I was a sophomore in college, my health deteriorated and I was put on IV antibiotics for six months. Despite this, I chose to continue
taking classes. It was quite a balancing act between my health and school. On top of coursework, I had a few short hospital admissions and plenty of doctors' appointments.
I also had the added stress of sharing something I was usually quiet about. I wasn't very public about my CF, so having to tell my college friends and professors that I had a chronic disease was difficult at a time when I was not feeling up to it. Having a drawer of IV infusion balls in the fridge makes you a lot more open about CF with your friends though.
I dealt with a similar situation when I had to go to the hospital while I was working. I had trouble figuring out the right way to tell my boss that I have CF and would have to take some time off. Even though I am doing well now, I still struggle with how to be more open with others about my CF.
Last year, as these things were on my mind, I helped plan -- and later participated in --
BreatheCon, a virtual event for adults with CF. I didn't know what to expect, but it was a total game-changer for me. Suddenly, I went from messaging people with CF on Facebook, to virtually speaking to them face-to-face. I can't even begin to say how important this event was in connecting me to others who are going through the same kinds of challenges. Being honest with this group of wonderful people with CF and hearing their stories has helped me slowly become more open about CF with my friends, family, and co-workers.
So when I found out that there were more virtual events being planned -- and one of them focused on life as a young adult -- I jumped at the chance to get involved. As the chair for the upcoming
CF MiniCon: Young Adult on Sat., July 22, I'm so excited to be planning, and most of all, attending, this event with so many of my peers.
The young adult working group has put together an awesome, diverse lineup of breakout sessions that will get at the heart of what it means to be a young adult with CF and all the emotions and growing pains that go with it.
Best of all, people with CF planned everything from the session topics to identifying the speakers and facilitators (and the BreatheCon and CF MiniCon logos … I designed them!). We decide what we want to talk about, and there are no hidden agendas and no sugar-coating from anyone.
I would never speak for everyone with CF, but I do believe each of us has different experiences living with the disease; that's what makes this MiniCon special. In this virtual, judgment-free environment, you get to focus on what's important to you. Whether it's talking about romantic relationships, starting a new job, or keeping on top of your
mental health, you're free to say whatever is on your mind. No matter where you are in your life, we all have something to share and something to gain from connecting with one another.
Ultimately, this MiniCon is whatever you want it to be. Chat one-on-one with other people with CF, listen to people share their stories, and sign up for small group video breakout sessions to get to know others with CF from around the country and around the world.
Working on the team to present CF MiniCon: Young Adult has allowed me to meet so many new people and learn and share so many things that only people with CF can relate to. No matter how you want to participate, we can't wait to have you join.
To join Kathleen at CF MiniCon: Young Adult, register by July 19 at CFF.org/minicon. All adults with CF age 18 and over are welcome.
Adult with CF
Kathleen, 24, lives in Philadelphia. She graduated from Northeastern University in Boston with a bachelor’s degree in computer science and interactive media and works as a web developer. She is involved in the Cystic Fibrosis Foundation both locally and nationally, as a member of the Delaware Valley Great Strides Advisory Council, a workgroup member for BreatheCon, and the chairwoman of MiniCon: Young Adult. When she's not working or doing treatments, Kathleen can be found planning her next travel adventure, sewing a new dress, or curling up with a good book. Reach out to her on Instagram or 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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