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.
The reward for trying to look your best -- even when you are sick -- shouldn't be people questioning whether you really have a serious illness. People with cystic fibrosis and other chronic illnesses need support and kindness, not second guessing.
December 10, 2019
How I Teach My Son Accountability For His CF at School
Don’t Be Afraid to Let New Friends Into Your CF World
Can you tell from these photos the ones in which I felt sick? Some of them are from the hospital, the car pick-up line, the house, and a few from my favorite thing to do (go to concerts). In some of them, my hair is long. In some others, it's short. My
face and body appear rounder in some photos than in others. The answer to the question is: I felt sick in every single one of those photos.
You can see that I have on makeup and my hair is curled, which hides the red face and tired eyes. But, in EVERY single one of those photos, I was sick, even if I was having a relatively good day. I have had someone say to me, “You look so healthy. I'm
so glad you're over the sickness.” (Just like someone commented on how far my son Bentley has come and asked whether he still was autistic.)
Autism and cystic fibrosis are genetic and do not have cures. Yes, Bentley has come so far in the past year with his speech and his behavior, but I assure you he is still autistic. Yes, the IV antibiotics got rid of the active infection in my body, but I still have CF.
I know that saying those things may seem like a compliment, but it is not. What I hear is, “Are you sure you have CF and aren't exaggerating?”
One of the worst parts of my illness isn't being sick -- it's the doubt. Everyone has a picture in their mind of what certain illnesses look like and if you don't match that, the automatic assumption is that you must be lying.
Clinically, I am the picture-perfect patient for pancreatic sufficiency. However, for someone not familiar with CF, I am not. Just like autism has a spectrum of symptoms, CF does too. Although one CF patient may be thin but have no sinus or lung issues,
another may have sinus and lung problems and be overweight.
Another factor to consider is the amount of steroids we have to take to keep our inflammation down. On top of cystic fibrosis, I have tracheobronchomalacia -- a weakening of the walls of the airway -- and allergic bronchopulmonary aspergillosis.
When I get infected sinuses or lung inflammation, steroids are used. When my back pain flares up, steroids are used. When I had my brain surgery for an inner ear problem, steroids were used. All of this steroid use resulted in weight gain. My natural
weight is around 140 pounds; however, having to take more than 40 rounds of steroids since 2014 caused me to gain a whopping 100 pounds, and it's almost impossible to lose until the steroids leave my system.
Another issue with being a parent and having a chronic illness is the judgment from people.
“Oh man, I would love to spend three days in a hospital bed relaxing!”
“It must be nice to have your mom come help whenever you are sick.”
“Must be nice to be able to say, 'I don't feel good' and have someone come running to handle your responsibilities.”
And my personal favorite: “I get sick too, but I don't have a choice and have to suck it up and take care of my kids because that's what real moms do -- they take care of their families no matter how they feel. I don't get to run to the doctor every time
I'm sick and get admitted to the hospital to escape reality.”
It sounds insane to think someone would say those things, but they have. I have one of the most unsupportive and uncaring families. I can count on one hand how many times my so-called family members have called to check on me.
There are a few things you should NEVER say to someone with chronic illness, invisible or rare illnesses, or chronic pain:
Just because you don't see the illness every hour of every day doesn't mean that person isn't sick or in pain.
If a cancer patient has hair, does that mean they don't have cancer? No. If an autistic person is verbal, does that mean they do not have autism? No. Invisible illnesses are just that, invisible. If you can't see the disease/sickness, it isn't because
it doesn't exist. It's because that person spends countless hours trying to mask the pain/disability. Whether one uses makeup, a smile, or fancy clothes to mask how they are feeling, or chooses to hide out in their house to escape, their disease is
What can you do for someone who has a chronic, invisible, or rare illness or chronic pain? Be supportive. Do your research. And most of all, be kind to one another.
Adult with CF
I am a stay-at-home mother to two amazing children, one with autism. My CF journey has been a roller coaster. Although I’ve been sick my whole life, I was 25 when I was diagnosed. I have a rare unknown gene mutation, so my CF experience has been a unique one to say the least! I’ve always had a passion for writing. Even as a teenager, I had a blog about my day-to-day life. My CF blog can be found at thisraremama.wordpress.com.
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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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