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 respond with love when pain drives people to make fun of my cystic fibrosis.
May 15, 2018
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How I Finally Found the Community I Needed
Invisible illness comes with visible bullying. There's a lack of understanding when it comes to the immense strain that cystic fibrosis causes in everyday life. That ignorance is infested with a lot of pain.
I was bullied the most because of CF when I was in high school. I was healthy enough to be on the basketball team, but I wasn't healthy enough to keep up with everyone running sprints. My teammates couldn't understand why I couldn't finish the wind sprints like them. I looked the part. I was tall and athletic, but they would make fun of me for being “out of shape.” My coaches didn't understand, either.
Teachers even made fun of me for having CF. I was class president, and our teacher sponsor joked that I was a bad president because I kept missing school. It's hard when people in positions of power question your illness, especially when you're a child; it makes it hard to trust authority.
Over the years, these instances caused different responses from me. Sometimes I became angry, other times I was sad. Sometimes I got a laugh at people's ignorance. Truthfully, the main reaction was pain.
It hurt knowing that my life was going in a downward spiral and people didn't seem to care. When death came knocking, it didn't seem like people were helping me keep him out. They seemed to nonchalantly want to let him in.
I've learned that I need to forgive people that treat me poorly because of my CF. When people hurt you, it's because they are in pain themselves. That's the only way for pain to spread -- it's like an infection. Now, when someone makes a comment about me coughing, or gets frustrated and takes it out on me for canceling plans at the last minute, I take a step back and remember they must be in just as much pain as I am.
Sometimes my initial response is still anger or sadness, but I do my best to forgive so that I can release them and myself from the pain we both share.
Forgiveness isn't an excuse for someone's poor behavior; it's simply transforming something made of fear into something made of love. We were put here to become alchemists and transform fear to love. Life will throw painful situations, like nasty comments, in our faces and it's our job not to take that pain and not spread it further. We must stop it in its tracks and return with an expression of love.
This may seem wrong to a lot of people because we live in a culture in which we justify our anger when people do us wrong. But we need to change the mentality if we're going to bring healing to ourselves and the world around us. Those of us who have CF and our families and friends affected by it already suffer so much pain. We don't need to create more by harboring resentment for those that hurt us. In a world where healing seems so impossible, this is a thing we can control, where we can make it happen.
Adult with CF
Bobby is a content creator, a rapper/producer, and a certified life coach who was diagnosed with cystic fibrosis at birth. He graduated with a degree in creative writing from the University of Central Florida. Bobby is currently on a path to bring awareness and change through music. You can find Bobby on his website, Bobby Foster Speaks.
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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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