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.
Living in Pakistan, I didn't know I had CF until I was 18 years old. After absorbing a big emotional blow, I started to fight back.
March 11, 2021
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My life took a sharp turn in 2016 and things have been quite different ever since then. That's when I learned that I had an uninvited guest -- cystic fibrosis. And this guest will never leave.
So, this monster was lurking inside me for 18 years. People talk about monsters under their beds; well, this monster was under my skin making me sick on and off, but never showing its true face.
2016 brought a new set of challenges for me to fight. Guess what? I did. Fun fact: it was the most dreadful time. Here's my story.
At the end of March 2016, I got a fever ranging from 100 to 101 degrees -- pretty normal for me. I thought it was viral probably because of a change in the weather; so, I watched it for a day or two, while I made Panadol (Tylenol) my best friend. The
next day, I woke up with a horrible backache on my left side, so bad that I could not breathe. I went to a doctor who mistook it for gastritis and gave me a syrup to calm it down. A family physician later diagnosed me with typhoid. But even after
starting antibiotics, the fever wasn't calming down and instead worsened. That's when I went to my pulmonologist and he diagnosed me with pneumonia and advised a combination of antibiotics to fight off typhoid and pneumonia.
One month passed and, in all of this chaos, Cambridge International Exams (CIEs) were a week away. My fever had calmed down but decided to pay a visit again, this time breaking all my previous records and hitting 104 degrees. Hahaha. That night, I was
scared to go to sleep. Why? Because I was scared that if I closed my eyes then something bad would happen.
My weight kept dropping (no surprise there) and my pulmonologist decided to admit me to a hospital Finally! The monster's about to be revealed. I had a lot
of tests done, including for CF. Did I tell you that it was all during my CIEs? Thankfully I had a three-week gap between them. But, the test results came back positive for CF.
I was blank, clueless, and bummed out. I Googled CF since, obviously, where else would you go when you have no answers?
I was scared because it said that CF has no cure (yet) and living in Pakistan means that there's no proper treatment to help control its progression.
But I decided that instead of being bummed out, I needed to have strong willpower and fight CF as much as I could. Yes, it's difficult to have a smiling face when you're hurting inside (physically, not emotionally) but it's not impossible, right?
There were times when I used to go days without doing my nebulizer because I had to adjust my routine to account for CF. It took me a while to get used to all of
this and to finally accept that if I didn't follow this routine, my health would deteriorate. That's when the battle began -- and it's still going on.
It has been four years since my CF diagnosis and I have decided that I will not let myself suffer in silence, which is why I am aiming to spread awareness about CF in Pakistan. My hope is that the taboo of having a genetic disease will one day die down
and people in this society will be more accepting toward those of us who suffer from any disease.
I still have days when I feel extremely demotivated and down about life, but then I remember that I cannot let CF dictate my life. It is me who has CF and not the other way around.
Hence, I am halfway through a degree that I have been dreaming of, because every time CF tries to pull me down, I fight and stand back up. That's what warriors do, right? I hope and pray that Pakistani CFers receive the life changing drugs for CF that
people around U.S. and U.K. have been receiving.
I want to help make Pakistani society a better, loving, and accepting society for all of us living with diseases like CF and other disabilities. Kudos to all of you silent warriors and stay strong! We're in this together!
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Raheema is a CFer from Pakistan, currently earning a Bachelor’s degree in social sciences with a focus in international relations from a university in Karachi, Pakistan. Raheema is looking forward to becoming a social activist, hoping to build a positive
community for everyone. She also hopes that proper CF treatments come to Pakistan very soon. Arts and crafts and reading help Raheema keep her mind clear. You can follow her on Instagram.
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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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