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.
Throughout my 31-year-long career, I kept my cystic fibrosis a secret. Let me tell you why.
April 11, 2017
Finding New Purpose After Getting New Lungs
Community Voice Brings Your Voice Into Everything That We Do
My name is Willem Wery, and I have cystic fibrosis. Although this may sound a bit like a confession, the truth is that my health was a closely guarded secret for most of my life.
diagnosed with CF at the age of 8 along with my little brother. Although my brother's symptoms and diagnosis involved his lungs, my CF primarily affected my
pancreatic enzymes with meals. I didn't want to be treated differently, so as a young boy in
school, I learned to discreetly take my enzymes with my lunch and snacks so that the other kids wouldn't notice.
My “discreet enzymes trick” continued as I grew up and
went to college. I thought for sure my girlfriend at the time -- now my wife of 34 years -- had noticed me taking enzymes with all the meals that we had together. But after dating for 6 months, she was shocked when I told her about my CF.
After college graduation, I started my first “real” job at a multinational technology company in New York. As a newly married man starting this adventure in a new location, I made the decision to keep my CF diagnosis private … my secret. Similar to my school days, I didn't want people to think I was different. I didn't know how people would respond in a business environment. Would my career be limited? I didn't want any sympathy. I wanted to be evaluated on the merits of my work.
Even though I was
living with CF, I was lucky to only need enzymes with each meal, as my lungs were still largely unaffected and I rarely got sick. Because of this, I was fortunate enough to take part in many aspects of life. I worked throughout the week while weekends were spent water skiing, snow skiing, hiking, and camping. Over time, I did disclose my CF to some close friends -- but this disclosure was very limited, and it was still a closely guarded secret.
After many years, we moved back to the west coast and I started a new job at a different multinational technology corporation. However, the previous decision to keep my CF diagnosis a secret remained.
At 39 years old, I was diagnosed with my first serious CF exacerbation and hospital stay. My pulmonary function tests (PFTs) had been slowly declining for years, but now I was really sick. This all happened to occur just as my team was preparing to leave for the largest technology conference of the year. I still hadn't told anyone about my diagnosis, but I needed a valid reason for not being able to attend. So, I told them that I had a staph infection in my lungs that required
antibiotics. Everyone understood, and my team picked up the slack.
It wasn't until late in my career -- at about 52 years of age -- that I decided it was time to disclose my CF secret to my boss of five years and a close working colleague on a trip to Germany. CF was affecting me more and more, and they needed to know what was going on.
As my career continued, it became increasingly difficult to do regular work. I realized it was time to heed my doctor's advice and follow my gut instinct to focus on my health and my
treatments. My career ended when I went out on medical
disability. It was finally time to break my silence.
I sent out an email to my team and colleagues with my plans for leaving and my “secret” CF diagnosis. The email brought many well wishes for a “speedy recovery and return to work.” It caught many people by surprise, as I had kept my secret so well-contained (although it did help them understand my coughing in the workplace).
Finally, my CF secret was out. I had made a successful career in a challenging, high-paced environment for 31 years. That chapter of my life was complete. Ever since that day, I have openly shared my CF diagnosis.
During a serious hospital stay a couple years ago, a singer-songwriter friend, David Blair, wrote a song for me titled “Take a Breath (Breathe).” It's a beautiful song, and he captures some of my feelings as to why I kept my CF a secret with the lyrics:
And I don't want you to know
'Cause I don't want you to cry for me
But it'd be nice to take a breath
And breathe deep
Tell myself I'm fine
Ignore the whispers that say otherwise
Don't wanna think about my time
I'll never be done with this fight
2017 Great Strides Ambassador
Willem was diagnosed with CF at the age of 8 in 1968. He graduated with a B.S. degree in engineering from the University of Washington, Seattle. He is happily married to his high-school sweetheart, Kathy. They have two adult sons and a granddaughter. Willem worked in high tech for 31 years -- 11 years with IBM and 20 with Intel, traveling extensively around the world. He left Intel in 2013 on medical disability due to the challenges of his disease. In his healthier years, he was an avid snow skier, water skier, biker, hiker, camper, and traveler, and he’s even barefoot waterskied. These days, he most enjoys being on his boat and spending time with family and friends.
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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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