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.
Growing up, the term “life expectancy” was always with me, affecting my choices and expectations. Over time, I learned to tune it out and live my life my way.
November 17, 2017
Taking Ownership of My CF
Survival Trending Upward But What Does This Really Mean?
Life expectancy is, at its core, a statistic, right? It is defined as the average age a person is expected to live based on how old that person is today. It can be used to show improvement over time or the need for improvement still. But for many with
cystic fibrosis, life expectancy isn't an abstract statistical concept. It has great emotional impact -- and that impact isn't necessarily positive.
The term once held a deep meaning in my head and heart. My life expectancy was about 9-10 years when I was diagnosed with CF in the early 1960s.
As a little girl, my mom would take me from our home in New Jersey to a CF specialist in New York. Once on the way home, I overheard my mom, aunt, and uncle whispering about how long I was going to live. I was about 8 years old and would sit on the floorboard
of the car as we drove across the George Washington Bridge. I was so scared of heights -- the fear of the bridge was foremost in my mind -- and what my mom was talking about seemed unimportant at the time. But, although I might not have been paying
direct attention to what my family was discussing, it did sink in somehow, unconsciously.
Life expectancy had a heavy, negative energy looming in the background, and it had a profound effect on how I viewed my future -- or if I even had one. To the outside world, I was a happy, funny 8-year old girl -- and honestly I was. What the world didn't
see was the young girl who worried about her future. How many more school plays will I miss? Will I get a chance to sing onstage? Will I graduate high school? Will
my parents let me go to New York City to dance on Broadway?
I tried to counter those thoughts by being competitive. I enjoyed running and other athletic pursuits. I still brag about receiving the Presidential Physical Fitness
Award at 12 (I crack my husband up when I relive the story). But that expectation about a limited life span was always there, and I allowed it to have a negative impact on the way I took care of myself. I was lying about being compliant.
After developing type 1 diabetes and not following my treatment plan, I landed in the hospital a month before my 18th birthday,
doing poorly. "Wait a minute," I thought to myself. "I'm going to be 18? I wasn't supposed to live this long." Was I already out of time?
The doctor sent a social worker to encourage me, telling me a cure was coming within 10 years. “You've gotta hold on,” she said. That didn't help.
I had many aspirations back then: joining Greenpeace, moving away from home, going away to college, being on Broadway, traveling, marrying, having children, and saving the world. As I lived past the life expectancy
of the time, I wondered if I was really living.
As people congratulated me for having made it “this far,” I became more conscious of the life expectancy number not connecting with my life experience.
After a lot of looking inward, praying, and counseling, I realized that when I was a little girl, the term had sunk its roots in deep, which I needed to sever. I thought, "Jeez, almost everything has a life expectancy, but I'm not a refrigerator whose
replacement I need to budget for." I began to think, "I can't live like this -- and I do mean live."
When speaking at fundraisers, I use the term life expectancy. Let's face it, that pulls on a donor's heartstrings. Keeping abreast of the numbers is important for fundraising and awareness, but it doesn't have the same negative energy it use to hold over
me. Not because I've surpassed that number, but I have learned and lived that stats are just stats. Statistics are impersonal. They are about “people with CF,” but not necessarily me.
As I meet young people with CF through social media, parents, or working with the Bethesda office, I am on fire to help remove the stigma of life expectancy that some believe is their destiny. In my life it showed its face as that, but I showed it who's
boss. Last month, I celebrated 28 years of marriage and watched my 2-year-old great-niece play soccer.
Living life with CF is complicated, to say the least. I didn't join Greenpeace, but I do take care of the environment. I danced on stage at 40, and I'm still trying to save the world. My hope is for people with CF and all who love them to never let life
expectancy get in the way of living life.
Adult with CF
Linda was diagnosed with cystic fibrosis at 3 years old. She has been educating the community about CF and raising money for research locally and nationally for the past 25 years. She served on the Adult Advisory Council, and serves on many task forces, including the executive board of the CF Gold Coast Guild. Linda lives in south Florida with her husband, Mike, and two cats. She is in love with her family and friends and celebrates them every chance she can. Her passion for the fragility of life keeps her mindful of the small blessings. You can follow Linda on Facebook, @LindaBowmanL on Twitter, and lscrappybowman 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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