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.
Before we knew what to call it, cystic fibrosis had inflicted damage on the lives of my sons and me and left fear in its wake. Three years after my sons' late diagnoses, knowledge has calmed the storm and provided a measure of peace.
October 5, 2017
My Changing Relationship With CF
Pulmonary Function Tests Blow
When cystic fibrosis first hit my sons and me, we instantly became prisoners of fear.
I had known fear in life but fear was always something to be conquered, to overcome. With the CF diagnosis, we were informed there was no cure. We had no
way of defeating, conquering, overcoming.
Or so I thought …
As Hurricane Irma barreled through the Caribbean and careened for us here in Florida -- intent on crashing into us -- I had peace. That peace faltered only when I thought about trying to do things that were impossible to do in the time period before Irma
CF officially barreled into my family in April 2014, and -- like a hurricane -- it was powerful, destructive,
and frightening. Before 2014 -- before my sons were diagnosed -- CF had been robbing them daily of oxygen, nutrition, and life. It had also been wiping out my energy. Unlike a hurricane, which passes by relatively quickly, CF had been striking
us continuously and stealing our peace for almost 19 years.
Today though, I have found peace -- a slightly shakable one -- but peace, nevertheless.
Finding peace with CF was not easy. Other elements of life buffeted us: auto accidents, job dissatisfaction, making ends meet, fighting with insurance companies. Funny, none of these stop when CF thunders and attacks.
Grief was a part of this journey, too. I don't remember anger; just the shock and intense sadness for my sons. I also remember a dear friend saying, "Michelle, I've seen you cry more this year than I have in the past five years combined." That was February
In three years of knowing CF, it has become a valued teacher. It has taught me to find deeper meaning in every moment, how to conserve energy and unplug, how to modify how I conduct business and manage relationships, and how to let go much more quickly.
It has given me freedom to relinquish a polluted city, a “promised” retirement that might never come, and many suffocations of the present.
CF has helped me choose warmer, salty, lung-loving waters, and blue, vitamin-D-filled skies. CF has reminded me that a little is enough, that less is more, and that I don't have to move at highway or hurricane-wind speeds to get things done.
CF continues to teach me to control what is in my power to control, be diligent in doing so, and everything else, let go.
Two years ago, I wrote that life with a diagnosis and without a diagnosis were the same in that patients and families still dance with hope and fear every day. I was wrong. Having a diagnosis is fearful at first, but so much better than fighting an invisible
foe. What would happen if we had a surprise assault from Irma?
When my sons were first diagnosed with CF, it was a surprise assault. CF is a perpetually raging storm; but the CF diagnosis means knowledge and skills. It equates to the ability to be proactive and decisive with small and big things, alike. It means
not wasting time trying to figure out who or what the enemy is. Instead, it means getting to “know” CF, intimately, then strategically planning and implementing an attack plan -- and actually living. A CF diagnosis means being able to train our children
in the same way, thereby giving them power and hopefully, peace.
Gone are the 2014 days of constant tears and fear. Today, we are still learning, but we are stronger and have peace. And as Irma stormed through, I realized that we have also been learning how to go sky diving, wind surfing, and jet-plane soaring on CF's
So, three-years post diagnosis, I am a calmer CF opponent. Now, when I speak about CF, I do so without tears, without sorrow, and without the “whys” … with only a slightly shakable and beautifully strong peace.
So, let CF come. My peace is stronger, well-worn, battle-tested, and enduring. And, the sun will come out tomorrow.
Mother of two young adults with CF
Born and raised in Trinidad and Tobago, Michelle, at age 20, emigrated to the U.S. She is a single mother to Nathan and Caleb who were diagnosed with CF in their teens. She is also a recent Florida transplant, Broward County Public School Teacher, blogger, and perpetual learner. She fights for her sons -- her greatest successes -- and all touched by CF. She believes that the perceived limitations of CF are never to be accepted. Follow @AbundantBreath on Twitter and connect with Michelle Ann Patrovani on LinkedIn.
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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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