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.
Accepting that I have depression was difficult. But my care team, family, medication and talk therapy keep me healthy.
November 17, 2015
Q&A With Xtreme Hiker, Hal Leshner
Real Talk: Expectations vs. Reality – Part 3
When I was 26, my life looked great from the outside. I lived in New York City, taught high school, was in a great relationship, had a lot of friends and enjoyed an active social life. I had cystic fibrosis, but how often I did my daily treatments depended on the intensity of my symptoms, and the only reason I ever did them more often was to keep up with my friends. I didn't talk much about CF with my friends. They knew I had a disease with two letters, but could never remember which two. I was embarrassed, ashamed and confused about having CF.
By 28, many things had changed -- mainly my health. I was in and out of the hospital. I had to stop working because I was not taking care of myself. I had broken up with my boyfriend and I spent a lot less time with my friends. My world had been turned upside down. What I didn't realize was that I was depressed.
I didn't know that the symptoms of depression are similar to those of a CF exacerbation -- tiredness, lack of motivation and not taking care of myself are symptoms of each illness, and one can lead to the other. After my second tune up in three months, I was still tired and felt empty and flat. Usually I left the hospital after two weeks of IVs feeling energetic and ready to get back to my life. This time, daily activities were an effort, I had no appetite and watched TV all day. I stopped showering and answering the phone. I did not do my treatments.
I started oral antibiotics, but after two weeks with no improvement, I figured I would have to go back in the hospital. I worried that I was starting the downward slide of CF. Then my doctor asked me if I was depressed and I recoiled. Depression was for morose people who felt sorry for themselves. I assured her I was not depressed, but I worried she might be right.
When my health crashed again, I tried to keep a happy exterior by saying I had kept up with my treatments and chest PT. But my doctor saw through the facade and brought up depression again. Knowing it was the moment of truth, I said, “My health sucks. I am not doing my treatments. I have no motivation to do them. I am having a hard time doing anything.” My doctor said that it sounded like I was experiencing depression, and I finally admitted it. "I guess I am," I said. I wish I could say acknowledging it made me feel better at that moment, but it didn't.
I felt crushed and confused. I did not want another illness. But, admitting I had depression began my journey with mental health.
A psychiatrist prescribed me an antidepressant, and I gradually felt better. I had more energy and started to take care of myself. My ideas of depression began to change, too. I thought depression was being sad, but I wasn't sad. I didn't really feel anything. But I learned that depression is a profound emptiness that robs one of pleasure, energy and emotional connection. Slowly, I began to see depression as an illness.
Treatment for depression has two parts -- medication and talk therapy. The medication was working. Now I had to start talking, including talking about CF. I resisted at first, but slowly opened up. Accepting my CF had been difficult. My feelings ranged from fear to anger to confusion to sadness. I had watched my older sister die from CF. I never talked about it, but mainly I felt guilty. Gradually, I was able to overcome being ashamed of having depression and CF.
With treatment, my life changed for the better. Happiness and laughter returned. I started teaching again. Since then, I've had ups and downs with depression and CF. It can be difficult to know if I am depressed or having a CF exacerbation. I have to look at myself. Do I feel empty and alone? Do I have any inflection in my voice or am I monotone? It is not black and white and I need my care team to help me figure it out sometimes.
I now treat my depression as part of my life. I see my CF doctor and my psychiatrist regularly. I know that if I don't treat my depression, I won't take care of myself. I don't love having CF or depression. The good news is that there is treatment, and it starts with not trying to deny either illness. Rather, I talk openly about CF and depression. My life is different from those of my friends. But, I know I am not alone.
Adult with CF
Rich was diagnosed with cystic fibrosis in 1969 when he was 6 months old. He also had an older sister with CF. Rich is a tough fighter who resides in New York City, and looks forward to many more years fighting CF.
May 2019 -- We were deeply saddened to learn of Rich's passing. Rich opened his heart to the CF community through our blog. He will be missed by many.
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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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