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.
In 1986, I decided to walk across America to raise awareness of CF. Positivity, my martial arts training and the people I met kept me going.
Craig D. Reid, Ph.D.
September 14, 2016
Finding a Balance Between CF and Childhood
Finding My Truth: Learning to Cope with CF
At age 29, I wanted to inspire and give hope to people with cystic fibrosis -- kids, teens, young adults and their families -- and show them that someone with CF could accomplish a feat that normal people couldn't … walk across America. I also wanted to demonstrate that a positive mental attitude and exercise (walking) were beneficial tools to help people face CF.
I was already leading an unconventional life. My life had turned around for me after I saw a Bruce Lee movie. The movie brought me instantly from waiting to die to wanting to live, and deciding to learn martial arts in their birthplace, China.
And I did learn martial arts. Along the way, I became an actor in Chinese kung fu films and met an ascetic martial arts master who subjected me to a perilous, 30-day test of perseverance and worthiness on Monsoon Mountain that took me five months to recover from but taught me many things.
The essence of martial arts is training not to fight but to develop self-confidence, self-assertion and self-discovery. Although it's a lot of self, it's not about ego. By disciplining the mind, body and spirit, one can build strong moral character and live a meaningful life. As one cultivates character, the goal is to absorb and reflect positive virtues like courage, loyalty, benevolence, honor, respect, honesty, peace ... and for me, to be happy, funny and jolly.
On May 18, 1986, weighing 175 pounds, with 30 percent of my lungs deteriorated and sporting a hemoglobin count of 2.3 (eek), I began my epic journey from Cornell University in New York. My wife, Silvia, supported me by driving the “CF Mobile,” filled with medical equipment, camping gear, food, water and oxygen tanks.
After walking a marathon a day for 115 days at a 4.3 mph pace, weighing 145 pounds, I ended my 3,000.2 mile walk in Seattle, Wash. Each day was filled with physical, mental and emotional challenges. Memories of danger, happiness and tears still abound.
Throughout the saga, terminally ill children promised me that if I completed my walk alive they'd fight harder. In Pennsylvania, a distraught mum slapped my face screaming, asking why didn't I walk last year when her daughter with CF was alive and needed inspiration? She cried in my arms and begged me not to fail. In Ohio, a kid with CF who was into baseball couldn't understand what I was doing until his dad told him to imagine running around the bases a million times. He asked me to score a million runs. In North Dakota, a family whose son had CF and muscular dystrophy drove 60 miles up the interstate to show him that I was for real. When the kid struggled to reach out his hand to mine, his mother cried while his father hid his tears.
Whether being attacked by vicious black flies, mosquitoes and dogs, avoiding cars accidentally or purposefully trying to hit me, walking against the wind up steep mountain highways for 10 miles, walking toward vomit-inducing dead skunk odors or fecal stenches emanating from animal farms, I kept pushing forward.
Through heat stroke, sun poisoning, muscle injuries, heavy winds and rain, golf ball-sized hail and freezing temps, with foot blisters that had blisters, I pushed forward. I refused to walk attached to an oxygen tank like the press and TV suggested I do so they could capture dramatic images. I'd never cheat myself or the many thousands cheering me on.
Folks opened their hearts and homes, giving us a place to sleep and a home-cooked meal, and arranging public appearances for me. In Illinois, a United Nations lawyer had me address a crowd of more than 3,000 at an outdoor Christian music festival. Their love was powerful.
The achievement garnered national attention as I received a Mothers Against Drunk Driving Humanitarian of the Year Award and a letter of commendation from President Ronald Reagan.
With so many adventures constantly occurring throughout the walk … there was no way I'd ever give up, there was no way I could fail.
Craig D. Reid, Ph.D.
Adult with CF
Diagnosed with CF in 1957, English-born Craig found new life in 1973 through martial arts. After attending Cornell, Craig became a stuntman in Chinese kung fu films. He later received a Ph.D. from the University of Illinois where he was a 12-time award-winning university teacher of pre-med biology and medical entomology. Apart from being a professional writer for 23 years, with more than 1,800 articles covering entertainment, science and health, Craig is also a medical writer, screenwriter and a stand-up comic. He's been married to Silvia Reid for more than 30 years.
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This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It 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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