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.
If you were to ask me what my most prized possession is, it would be my sleeve tattoo. Getting this tattoo helped me recover emotionally from a month-long hospital visit and keeps me motivated today.
June 28, 2018
4 Ways I’ve Learned How to “Adult” With CF
Trying to Weather the Emotional Storm of Physical Breakdown
I've always been a fan of tattoos. Ever since high school, I've doodled ideas for tattoos in my notebook. But when it came to turning those ideas into actual tattoos, I didn't know exactly where I should start.
Then in 2012, I
almost lost my battle with CF. I had walking pneumonia for four months prior to
collapsing outside while landscaping. I spent a month in the ICU. During my hospital stay, I
experienced several physical complications -- extreme hypoxemia (low concentration of oxygen in the blood), allergic
reactions to pain meds, and temporary paralysis from the sedatives I was given,
to name a few. I suffered from post-traumatic stress disorder (PTSD) after the
incredibly intense and long hospitalization. Traditional talk therapy can be a
challenge for me, so I wanted to do something creative to work through my
trauma. While thinking of ways to cope, I came up with the idea of combining
all of my tattoo ideas into a full sleeve tattoo dedicated to my CF story.
Keep in mind, I had never gotten a tattoo before. I was nervous, but I thought if I could get through such a painful hospitalization, I could sit through a few uncomfortable tattoo appointments for a piece of art that would mean the world to me. My tattoo
artist, who is a friend of mine, looked at all of my ideas and we put together a mock sleeve. I was instantly in love with how our rough draft came out, so I decided to go “all in” and make my very first tattoo an entire sleeve.
My CF sleeve has a nautical theme because of how important salty air has been throughout my recovery journey. Starting from the top, there is a rose representing the Cystic Fibrosis Foundation. Below it, on the outside of my arm, there is a portrait of a captain's skull to show that even though I don't always look sick, this is the reality of the disease. Right next to the captain's skull, there
is a ship. Just like a captain always goes down with their ship, a person goes down with their cystic fibrosis.
On the inside of my bicep, there is an anchor tangled in the tentacles of something foreign. An anchor, just like CF, stops and can control an entire vessel. Then, my will is represented inside of a bottle along the basilic vein of my arm, closest to
the center of my body and towards my heart. The bottle is floating through a storm, which is the whole background of my sleeve.
On my forearm, there is a shark chomping through an oxygen tank. The shark is wrapped in a banner that has my gene mutation, G551D, followed by “I am the hero of this story.”
On the inside of my forearm, there is a scuba diver armed with a knife, but they are still being strangled by something foreign, showing that sometimes you can't win every battle. Pictured below the scuba diver, there is Poseidon with his trident,
which represents an alternative force that can change everything in the blink of an eye, like beginning Kalydeco® five years ago did for me.
I ended the sleeve with a sailor's rope. Ropes on ships go through endless storms, just as a CFer does with their health battles; but no matter what storms the ropes and ship go through, they always seem to make it out in the end.
I recently continued my story on my calf with a similar nautical-themed sleeve, anchored to my foot with another rope to keep me grounded.
It took approximately 25 hours to finish the tattoo and it was SO worth it. If you were to ask me what my most
prized possession is, it would be this sleeve. Literal blood, sweat, and tears went into its creation and the story itself -- and I couldn't be prouder to display it on my body.
Adult with CF
Sam is 23 years old and was diagnosed with cystic fibrosis at 5 and cystic fibrosis-related diabetes at 14. She received her bachelor's in anthropology and graduated magna cum laude despite constant health issues. These days, Sam is an amateur bodybuilder and works full time as a gym manager in Connecticut. Her introduction into the fitness industry was through writing hospital workouts for herself and fellow CF patients. Through complete dedication to her health and fitness, she went from being intubated with little hope of a future to having her highest lung function in a decade. You can follow Sam's story on Instagram @thatbungirl.
July 2019 -- We were deeply saddened to learn of Sam's passing. Sam opened her heart to the CF community through our blog. She will be missed by many.
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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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