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.
My husband and I knew the statistics. Parents of children with chronic illnesses have above-average divorce rates. This didn't hit home until we had an opportunity to step away and realize how important nurturing our relationship really is.
October 11, 2017
Teenage Rebellion With Chronic Illness
My Changing Relationship With CF
As parents of a child with cystic fibrosis, we have realized that the learning curve is pretty steep. CF can be unpredictable. One month, things are going along great. The next, your child is diagnosed with a lung infection and you start a whole new level
of treatments and routine. Many of us know how difficult it can be to take time to care for ourselves while supporting our loved ones with CF. But, taking time to nurture our relationships -- specifically our relationships with our partners -- can
sometimes feel impossible.
It had been a rollercoaster ride. For almost two years, our daughter had been fighting a lung infection. She had been hospitalized, followed by months of antibiotics. We wanted the infection gone and we were all feeling the strain. Everyone wanted
life to return to normal, or at least our version of normal. A family member suggested that my husband and I take a break while they took care of our kiddos. Although they never came out and said it, the tension between me and my husband was obvious.
We agreed to go, but when the day came to leave, I completely fell apart. How could anyone else handle our routine? It all seemed too much. I considered canceling, but when my husband reminded me how much we had both been looking forward to our time away
together, I reluctantly agreed to go. Tears streamed down my face as I looked out the window on the way to our destination.
How did it get to this point? I was mad. Mad for my daughter, who deserved to be out playing instead of doing treatments. Mad about time spent doing treatments when we could have been hiking, biking, or just spending time together as a family. Mad at
my spouse for reasons I didn't even understand. As the tears turned crusty on my face, I realized I wasn't really mad anymore. I was exhausted, and catching our breath was exactly what my husband and I needed.
Over the next few days, my husband and I began to talk, like really talk, about our life. We reminisced about when it was just the two of us, and what it will be like when it's just the two of us again. We laughed about all the fun we've had, and we cried
about the challenges we've faced. We missed the kids and talked about how blessed we are to have them as our children.
Over the years, our thoughts and feelings had been shoved aside in order to cope with new routines and challenging circumstances. It felt so good to share. So, we vowed to take more time for our relationship. Regardless of the circumstances, we are stronger
We learned the hard way that prioritizing your relationship with your partner is important. No, it's not easy; but in the face of CF, you ARE stronger together. No one knows your situation better than the person standing with you at a hospital bedside,
during vest treatments, or using nebulizing antibiotics for the first time. So, here are some of the important things we realized:
George Orwell said, “Happiness can exist only in acceptance.” By accepting our situation and supporting each other through the good days and the bad, we consider our family a force for CF to reckon with.
Mother of a child with CF
Morgan is the mother of Cade, 8, and Annie, 3, who has CF. Morgan graduated from Montana State University with a bachelor’s degree in Health and Human Development. She spent many years working in the non-profit sector and is now enjoying her role as a full-time homemaker and homeschool teacher. Morgan is a state advocate for the Foundation, a member of the parent advisory council with the cystic fibrosis team at Billings Clinic, and a top fundraiser for Great Strides Billings, MT. She lives in Bozeman, MT with her children, her husband, Colby, and their two faithful dogs, Jack and Sally.
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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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