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.
After years of health problems and a move to the U.S., I finally was diagnosed with cystic fibrosis at age 27. Once I knew about this disease, it was important to me that my family and friends -- and even my old doctor -- in the Azores know about it too.
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I grew up on a 23-square-mile island in the middle of the Atlantic Ocean with about 5,000 inhabitants. Cystic fibrosis was unknown to me until I was 27 and got diagnosed in the U.S. I don't know if a diagnosis was possible while I lived in the Azores
and if the resources would have been available to treat me.
As a child living in such a small area, you get the benefits of a supporting community, the freedom to run around anywhere but limited resources, especially with regards to health care. I feel like I had a normal childhood, playing with friends and going
to school. I made the most of what I had. At times I was sick, but I never limited myself because of that. I absolutely loved the ocean and now -- looking back -- I wonder if it was because I felt good being near it or in it; most likely, being near
the ocean helped me with some of my CF symptoms.
At age 19, I immigrated to the U.S. with my parents and grandmother as part of the family reunification program. In the U.S., attending university and graduating was my priority, but I
struggled to learn English, and my health also struggled. Although I was sick at times while living in the Azores, it wasn't usually for a long period of time, and I was able to get better most times without consulting a doctor. In the U.S., my main
struggle was the non-stop cough during classes, during job interviews, and at night, which then lead to a vicious cycle of being tired and falling sick again.
I was sick more often and for long periods of time. Asthma was the diagnosis I got from most doctors, but the various inhalers didn't help much. At the insistence of my fiancé at the age of 27, I consulted yet another asthma specialist who diagnosed me with CF. My asthma doctor called me at work and insisted that I come to the office for a visit as he would like to discuss test results with me, which he wasn't comfortable voicing over the phone. I was very apprehensive going to the appointment
thinking that most likely I had some kind of cancer. He was very empathetic and told me I had CF, which I had no idea what it was. I was just happy it wasn't cancer.
As he talked to me about some of the symptoms, I wasn't very worried as I had already experienced most of them and had dealt with them as best as possible.
I did get really scared for my life when I got back to the office and actually Googled CF. What a shock!
I made my first appointment at the Boston CF clinic, which was very helpful as I began to understand that CF could be managed.
After the initial shock of learning about CF, I actually started feeling better as my new meds were actually working for me. In the U.S., the health care resources to help me after I got diagnosed were enormous, and I got to meet great doctors and a
great team at the Boston CF clinic that helped me be healthier.
Having a concrete diagnosis also helped my parents understand why their first child died.
My older brother was just 26 days old when he passed away because he couldn't breathe. At that time in the Azores, there was nothing the doctors could do for him. Although we don't know for sure that he had CF, we feel strongly that was the reason. My
parents lost their infant child with no explanation of what had caused his death. When I explained what CF is to them, they immediately related some of the symptoms to the loss of my brother. It was like they were still waiting for an explanation
for his death even after all these years. Although it is hard to learn your child has CF, for my parents it also gave them closure for the child they had lost. I cannot understand the loss my parents went through, but I know that I want to take care
of my health, so they don't have to feel that again.
After my diagnosis I returned to the Azores to visit family and friends. I wanted my family to be aware that I had CF as most likely they carried the same genes. Although I didn't know anyone who had similar symptoms, I felt like I had to let them know.
I also wanted to talk to the doctor who had treated me while I lived there. The doctor had worked very hard to help me while I was there, but he never thought I had CF; he had traveled a lot and knew all about CF. His reaction to my diagnosis was
the most intense I have ever seen of anyone whom I told that I had CF. His facial expressions showed surprise, consternation, panic, denial, and fear, and I had to be the one to reassure him I was going to be OK. I got different reactions when I explained
CF to friends and family, but to me it was important to provide awareness to this disease.
Living in the Azores, my health had been stable. In the U.S., I have access to great doctors and medical resources that have enhanced my health. Today, I feel better than when I lived in the Azores. The support of my family and friends cannot ever be
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Marisa grew up in the Azores, Portugal, and moved to the U.S. later in life. She has a bachelor's degree from the University of Massachusetts Lowell and a master's degree in business administration from Bentley University. She loves to read and travel. She works in the financial industry as a portfolio analyst for a large bank. Marisa lives in Reading, Mass., with her husband, Pradeep, and daughter, Sachi.
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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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