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.
This blog discusses suicide and suicidal ideation, and some people might find it disturbing. If you or someone you know is suicidal, please contact your physician, go to your local ER, or call the National Suicide Prevention Lifeline at 800-273-TALK (8255). The program provides free, confidential support 24/7.
Having experienced loss before, I thought I knew how to process grief. But, when I lost my cousin to suicide and my grandmother to the pandemic this past year, I reacted in unexpected ways and learned new lessons about coping with grief.
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I think the biggest thing I have learned from grief is that the perception of the future I have is an illusion. And that hurts every time.
For most, the last year has been riddled with grief of some sort. I have close friends who have lost family members; some are experiencing miscarriages, while others are ending relationships.
We are experiencing heavy personal transition within the turbulence, sadness, and separation of a pandemic.
For me, I lost my favorite cousin Mason to suicide at the beginning of the pandemic; and within months, my Grandma died because of COVID-19.
I am learning we all navigate our grief differently in ways that our brains and bodies feel safe enough doing. For me, I didn't start feeling how earth-shattering Mason's loss was until about eight months after his death. I suppose I vacillated between
denial and depression during that time. But, like a light switch, the grief that had knotted my body and brain was unleashed once my Grandma died. I woke up sobbing some nights, and my bones physically ached. Other days, I overreacted to small inconveniences.
Grieving isn't new for me. I have lived my life with cystic fibrosis -- a disease that reminds me daily of my mortality. I have lost many friends to CF, and each hospital admission or productive cough has carried its own mourning process. I have lost
close friends without CF to unexpected and tragic death.
I thought I knew how to do this, but -- turns out -- I am learning more and more that grief accumulates and demands to be acknowledged.
When someone you deeply love (or heck, even an acquaintance) passes away, there is no “should have” or “could have.” There is only the conscious decision to choose to pick up the pieces and figure out how to wield them. I try to lean into my grief, like
an old friend, and ask, “How are you?”
It can be vulnerable and uncomfortable to sit with my grief and feel what surfaces.
Inevitably, there's a deep want for some sort of connection with the person I lost, and I feel helpless. I sometimes bury this desire under distractions, hoping that I don't have to return to it. But, as I get older, I am learning that that approach seems
to undermine the connection and bond I had with Mason and all the folks who have passed and deeply influenced me into being the person I am.
I've sat with the immensity of my loss and asked myself what is the best way I can go forward -- one that allows me to feel deeply saddened but not swallowed.
For me, grief is teaching me that it reflects my deepest fears, values, hopes, and love. Grief ultimately has taught me how fragile life is and the importance of being a genuine friend.
Picking up the pieces of my broken heart, I take these reflections into all my encounters. For me, connecting with others without hesitation seems to be an approach that helps the best. I have become good friends with a lot of my cousin's old friends,
and I now let folks into my life with ease.
It's difficult to navigate what to say around someone who is grieving. But, there is something about the immensity and universality of the emotion that can allow us to become closer and more genuine with one another. When I act from that space, it seems
easier to appreciate the uncertainty of living and the presence of another person.
Loss doesn't get easier, and I don't think it's meant to. It taps into core wounds and fears. I think we all have our own way of processing big transitions and losses. I think you can use your experience to remind you to live more mindfully and kindly,
while holding space for others.
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Luisa is a 26 year old with CF who lives in Memphis, Tenn. and is the community manager for CF News Today. Through this position, she injects her perspective as a Hispanic woman and her love for life and stories in all her interactions. Luisa is an avid
coffee lover and worldwide adventurer. In her downtime, she practices Portuguese and takes selfies with raccoons. Follow her on Instagram at @ladillatomica93.
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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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