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.
Having enjoyed good health most of my life, I gave little thought to cross-infection risk -- even though others in my family have cystic fibrosis. The birth of my son has me rethinking that.
October 4, 2018
The Pains of Pain Management
Being Diagnosed With CF and CF-Related Infertility at the Same Time
I am a 34-year-old cystic fibrosis patient who has, by and large, had good health in my time managing this disease. My only CF-related surgery has been for nasal polyps. I have routinely had lung function in the 80s and 90s (although once it dropped into the 30s). I have been capable of putting on double-digit pounds with focused effort and a few extra bucks.
Despite my verified, undisputed status as a CF patient and CF gene carrier, I have often felt out of place in the CF community. Others struggle with much greater obstacles than I do, such as lung transplants, gastrostomy-tubes (G-tubes), and severe weight gain issues.
With my wife, Ashlee's, recent in-vitro fertilization (IVF) pregnancy and the birth of our son, Lewis, I have found myself facing a risk to all CF patients, no matter the symptoms or severity: cross-infection between CF patients.
You see, Lewis has been an adorable magnet for friends and family, a group that includes other CF patients. This unique circumstance (I have never come across any data as to how many CF patients are related by blood or law to other CF patients) has put us in a pickle that has caused significant strain on our energies and emotions. With each holiday, birthday, or one-off occasion to celebrate as a family, wanting everyone under one roof has been pitted squarely against the risk that the CF patient family members might cross-infect, the consequences of which could be profound.
Who gets to go to Grandma's birthday party?
Do I get “ownership” of Lewis' upcoming birthday celebration over those who love Lewis but also have CF?
If it is only a 10 percent (or less) chance that a cross-infection may occur, can't we roll the dice and simply do our best to stay far enough apart (at least six feet) in the house or restaurant?
Since the germs can live on surfaces, is it reasonable that we could be vigilant enough to protect ourselves during the event?
These are just a few of the questions we have faced as a multi-person CF family, and in the past, we often chose the roll-the-dice option.
What I have found as I have aged, gained a wonderful wife, beautiful son, and a mortgage, is that my anxieties and level of fear in these situations has increased exponentially. My relatives have good intentions when inviting all family members to every holiday and party, but as the stakes of life have increased recently, my internal thoughts have gone from something like, “Relax, wash your hands frequently, and enjoy the party,” to “Why is no one concerned about protecting our health that we work so hard for?” and ”Where is the nearest exit?” to “Why is this happening?”
I realized that during my formative years, someone else was in charge of protecting my health, and when I left the nest to live the life of a carefree 20-something, I was too naïve to care. It has been a slow realization that beyond taking my enzymes and doing my treatments, I am now the only line of defense in guarding my pulmonary health against risky environmental situations. And there is a need to stand up to strangers, co-workers, and even family. It's easiest to turn down a cigarette offer from a fellow Vikings fan at U.S. Bank stadium. It's a level up to explain why you can't sit at the office happy hour one table downwind from the heavy chain smokers. It's hardest to explain to those you love that you won't attend major family events because they don't appreciate the risk for your lungs and the anxiety it creates inside you.
So I can't share the same war stories and commiseration level with my fellow CFers who have been through transplants and G-tubes. Regardless of where we fall on the health spectrum, the need to protect ourselves and manage our own risk-aversion levels is common ground. Those who love us will accept and respect the level of risk we are comfortable with as we navigate the world -- with a few extra considerations.
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Adult with CF
Tim was diagnosed with cystic fibrosis as an infant, and credits his parents and CF care team for providing him with years of phenomenal CF care. He completed his MBA in social entrepreneurship and is currently the director of a mobile food shelf program in the southern Twin Cities. Tim lives in Oakdale, Minn., with his wife, Ashlee, and their two dogs, Bou and Sully.
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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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