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.
There are no easy remedies for the perpetual dance that the parents of a chronically ill child do to deal with the painful and enduring isolation. And personally, I found a sense of hopeless defeat.
March 10, 2016
3 Important Lessons Learned on the Road to Becoming a Dietitian
Growing up, I thought that I knew loneliness well and understood isolation. But I was wrong.
I had not yet sampled cystic fibrosis's bitter, mutant, devastating isolation that could seemingly go on forever. I had not yet tasted the perpetual isolation that comes with not knowing the name or face of the disease that my sons were living with. And I fought that battle for 18 long years, knowing that there had to be a name for whatever it was that afflicted my boys.
When my first son, Nathan, was born, he struggled to thrive. He would feed well and within 20 minutes, projectile vomit across the room. His abdomen was often distended and he would writhe in pain. Often, five or more days would elapse without him having a bowel movement. He did not gain weight and rarely slept. He was continually congested and
plagued with infection after infection. He coughed non-stop while his lungs sang an awful song every time he inhaled. Fear and panic often crippled me as I heard the same diagnosis over and over again: respiratory infection, ear infection, sinus infection and asthma. These diagnoses of chronic ailments would go on until Nathan reached adulthood when he was finally
diagnosed with cystic fibrosis.
Before Nathan was born, I worked as a teller at Chase Manhattan Bank. When I returned to work, I tended to be absent more than I was present. I regularly called in “sick” because my baby was sick. Eventually, I resigned. I lost my work community, the stable relationships I had with my coworkers and the many transient ones I had with customers.
At home, there was perpetual discord as my marital struggles worsened. By the time we tried to make a concerted effort to go on dates, we'd gone too far down the diverging roads of separateness, isolation and despair. And so I cared for my Nathan and our new addition, Caleb, alone.
Isolation, like cancer, starts in one area and silently spreads to so many others. It robs you of all that you do not want to lose. You feel alone and adrift -- mindlessly so -- in all that you do to
care for a child with chronic illness. You become robotic, doing all that is necessary on auto pilot.
There are no easy remedies for this perpetual dance that parents of a chronically ill child do to
deal with the painful and enduring isolation that accompanies having a sick child.
Personally, I found little difference between having the CF diagnosis and not having a diagnosis.
In both, I've watched my children struggle daily. In both, I've known hopelessness and loneliness. In both, I've had to fight for hope to prevail -- to find a cure or to just get up in the morning and have my children have a “normal” day.
In both situations, there is the loss of friendship, companionship and sometimes spousal relationships. In both, there is never-ending exhaustion and the desperation of wondering and searching for something that will make a difference. In both, we travel through a long darkness.
As fleeting as it may seem, we have to somehow find hope. For me, it meant making instant friendships with strangers on buses, sidewalks, doctors' offices, anywhere really. It meant stealing those moments whenever and wherever I could find them and later delighting in the memory of them over and over again.
It meant much reading and self-analysis and writing in journals to make sense of myself and my life and my place in this world. It meant grabbing breaks when they came to escape to the outdoors, to take a walk or push myself into a run or to bask in the sun. It meant being a mom devoted to one son and then two, and figuring out that by the time Caleb had arrived, I already knew some of what to do and what not to do. It meant that as my boys grew, I could rejoice in each stage of their growth and independence and successes. And it meant that I, too, could look for and find new dreams.
Today, we face CF with the conviction that we shall overcome. And we do so with love and laughter and downright silliness.
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.
Share this Post
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.
Follow Us On
With more than 70 chapters and offices across the country, there are plenty of ways to get involved.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails