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.
As the single parent of a child with cystic fibrosis, life is a difficult balancing act. That's why, sometimes, I feel a bit like Jean-Claude Van Damme.
August 23, 2017
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In 2013, there was a Volvo commercial where Jean-Claude Van Damme balanced his body between two semi-trucks as they slowly drove backwards down a desert highway. As the trucks sped up, they also drove apart, until Van Damme was literally doing the splits between both trucks. It was equally terrifying as it was thrilling. That is what it is like to be a single parent of a child with cystic fibrosis.
No, wait … that's just being a parent.
This time, imagine Van Damme calling his health insurance company, requesting a
pre-authorization, filing an
appeal for a medication that costs $7,000 a month, administering 40
medications a day (including
tube feeding), writing up a 504 plan for school, checking in with seven different specialists, reading everything about CF, joining a support group to
emotionally handle the stress, grocery shopping, and financially providing for an expensive medical condition -- all while doing the splits between two semi-trucks driving in reverse down a desert highway. That is what it is like to be a single parent of a child with cystic fibrosis.
No, wait, that is what it is like being a married parent of a child with cystic fibrosis.
Now, imagine Van Damme doing all of the above, while also going to court for child support; ensuring that your child receives the correct medications while at the other parent's house; helping with homework; driving to soccer, swimming, gymnastics, and Girl Scouts; feeding the dog, cats, and guinea pigs; trying to maintain normal relationships with friends; balking at people who suggest you could actually date; doing all of the paperwork, yard work, and life work that everyone is required to do; plus, exercising every once in a while because your doctor gave you the “take care of yourself” speech -- all while balancing a Jean-Claude Van Damme split between two semi-trucks driving in reverse down a desert highway. And that is what it is like to be a single parent of a child with cystic fibrosis.
Parenthood is not a competition, and I'm not saying all of this to be, “Woe is me.” I am also not Jean-Claude Van Damme, rocking a six pack and buns of steel. (I wish. I can't even do the splits on solid ground.) But, I do believe that single parents of children with chronic conditions are in a situation that is damn near impossible. Or Damme near impossible. Forgive me, I love puns.
There is no batter on deck, no actor in the wings. No one is there at 10 p.m. to run to the store for milk, take the garbage out, read bedtime stories, or take the dog for a walk. So, more often than not, dinner dishes are left in the sink, the yard isn't mowed, the laundry sits in the wash until it smells like stinky feet, and the very last person you take care of is yourself.
As a single parent, instead of enjoying the journey, we are sometimes too busy staring at the pavement, concentrating hard on not slipping, because one move, one breeze, one slip, means that you fall. And, your child falls with you.
I didn't even realize how much I was balancing until when, at the age of 38, my daughter and I moved in with my parents for a year. My mother, after a long day of work, brought home milk. She'd noticed we were out and took it upon herself to run that simple errand. That little gesture took my breath away. I thought, “This must be what it is like to have a partner.”
When you are a single parent, you don't have a backup, a safety net, or a stunt double when you're too tired to find your own balance. The gesture of picking up milk made me profoundly grateful and, at the same time, profoundly sad. I suddenly realized what I was missing.
I struggle every single day to find that balance. I'm equally terrified and thrilled. I know that if I waver, look down, look up, or think too hard, it could all be over. So, I try to only look forward. I pretend I'm a martial arts master -- the Jean-Claude Van Damme of single CF parenthood -- and try every day to make the impossible possible.
Mother of a child with CF
Elise is a contributor on What the Flicka?, Scary Mommy, The Mighty and Mamalode, and has had essays featured in Los Angeles Parent Magazine, Literary Mama Magazine, and on KPFK’s radio program, Motherhood Unplugged. She currently lives in Iowa with her teenage daughter, Adelaide, who’s thriving and living life to its fullest and funniest, despite having cystic fibrosis.
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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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