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.
Learning to loosen the reins a little as my daughter has become an independent teen has been challenging, but any fears I feel have been tempered by watching her grow as a human being.
Lora Mitchell Bonham, MSW, LCSW
February 27, 2020
What I Learned About My Trikafta Weight Gain
Empowering Your Outer Circle to Advocate
On April 28th, 2003 my second daughter, Gracie, was born via emergency C-section. I had been sent to a high-risk obstetrician (OB) following my 17-week ultrasound. My regular OB saw a “bright spot” on her bowels. She was born with a meconium ileus, typical in cystic fibrosis births, and was one sick baby. At one day old, Gracie had surgery to remove the blockage. Afterward, she sported a colostomy and an ostomy bag for a couple of months before having her bowels reconnected. Her official diagnosis came back when she was about three weeks old. Delta F508 and E56X were her mutations, one, the most common, the other, the newest nonsense mutation to be entered into the database.
Those first few months are like a blur in my mind. Everything happened quickly and differently than I'd expected -- than what should've been. There were days when my husband and I didn't know if Gracie would make it through the night. With a two-year-old at home, I was constantly torn between being with my sick baby in the hospital and my toddler at home. When I did get to the hospital, I rarely was able to hold Gracie. Her ostomy bags fell off frequently, causing her stool to irritate her skin and make a mess. Many nights I would sit next to her and hold her hand. I cried a lot, mourning what I'd spent the previous nine months dreaming about.
Gracie healed from the surgery. She grew, began eating well, and we were able to bring her home in mid-July. This is when our real education in all-things CF began. Treatments, medications, caloric intake, and bowel movements consumed me. Caring for her felt so robotic and structured that I struggled to bond with my beautiful new baby. Fear and anxiety about her future also held me back from building a strong attachment.
Opening up about these struggles with the CF clinic social worker was one of the best things I did in the beginning. She encouraged me to seek treatment. Therapy, along with becoming involved with the Cystic Fibrosis Foundation through Great Strides, helped me begin healing. Taking steps in a healthier direction allowed me to bond with my baby Grace.
I share this history because, as she has grown and developed, I can see how those beginning months affected her, as well. Reflecting on the traumatic effects that her prolonged and necessary neonatal intensive care unit stay had on her has helped me to develop a more compassionate and understanding lens to look through as I've partnered with her through our journey with CF.
Early in Gracie's education, I taught teachers and students about CF in classrooms. I'd bring in Gracie's meds, her vest, and a year's supply of hand sanitizer as I advocated for her needs at school. Gracie loved to hold up items or demonstrate her vest for the classroom or school-wide assemblies.
Gracie and I continued to bond over our crusade against CF. We smiled for photos that accompanied newspaper articles, pictures for letters to be sent, and stood in the front of hundreds of people as I tried to empower myself in the face of a disease that often strips control of those affected by it. Because Grace was extremely shy, I became her voice in pleading with those in our community to help fund research for a cure.
At home, our schedule was like clockwork. There was an understanding from the beginning that treatments and medications were like brushing teeth and bathing, part of the day no matter what. We created sticker charts and rewarded Gracie for her compliance. She rarely fought or complained about the intense regimen.
During sixth grade, Gracie suddenly began to find ways around treatments: She reprogrammed the timer on her vest to shorten her treatments. She squirted part of her hypertonic saline vial into the carpet to make it look like she'd used it all. She skipped enzymes when she was with friends so they wouldn't see her take them.
It became apparent that I needed to up my game. Gracie had been begging for a dog for several months. My husband and I were overwhelmed with our four children, all younger than 12 years old. We did not want a puppy. Gracie proposed that if she did her treatments faithfully for three months, we would buy her a Yorkshire Terrier. We agreed. Knowing how challenging treatments had become for Gracie lately, I thought it wouldn't be possible. I was wrong.
She earned her Yorkie and continues to feel pride about the deal to this day. I was less than thrilled at first, but seeing how much she loved that puppy and the growth that occurred in Gracie as she cared for Koda, I can't imagine our home without her.
I once thought I had this parenting gig figured out, but pre-teen and teenage years have felt like a total game-changer.
My techniques worked well with three of my children -- and then there was Grace. She has taught me a very important lesson during her teen years; relationship is everything. We create an emotionally safe place for her to open up without correcting her and she shares her thoughts and ideas. I'll be honest: Sometimes she says things that freak me out, but I have learned to keep a pretty good poker face and stay curious as we talk about the positives and negatives and possible safety concerns. We are able to collaborate with her on plans and schedules. I've learned that I can make demands all I want, but unless I am willing to work with Grace to find mutually agreeable solutions, I'm just spinning my wheels.
Just as I feel a need to be in control, Gracie, now 16, also feels that need -- as is expected. I'm learning to gradually give her more power and control in dealing with her illness as well as in who knows she has CF. This has meant allowing her to take a step back from fundraising and other events at times. I'm happy to say that in the past three years, she's gone from asking me not to tell anyone she has CF or post anything about CF on social media, to inviting 10 friends from school to join our team for Great Strides and posting CF bracelets for sale on her Instagram page.
I've loved watching her relationship with CF evolve.
My relationship with Gracie has changed so much from the first time I saw her frail body lying in an incubator until today when she invites me to go to country music concerts and long drives with her. We have both shed countless tears as we say the wrong things, apologize, and try to do better. There has been lesson after lesson learned as I watch her gracefully learn to love herself and others without setting limitations because of CF. Although I've seen CF steal so much from those in its grasp, I've also learned that joy and gratitude for everyday miracles seem to be amplified when we step back and trust love to lead.
Lora Mitchell Bonham, MSW, LCSW
Mother of a child with CF
Lora is the mother of Gracie who was diagnosed with cystic fibrosis at birth. Lora received a bachelor’s degree from Brigham Young University and a master’s degree in social work from the University of Utah. She served on the CF Parent Advisory Council
at Primary Children’s Hospital and has volunteered with the CF Foundation through the Taste of Utah, local school fund-raisers, and other events. She organized a Great Strides team, “Gracie’s Angels” and has helped in co-organizing motorcycle rides
and team relay races. Lora lives in South Jordan, Utah with her husband, Craig, their four children, and two dogs. You can reach her at email@example.com or on instagram @redbirdcounseling.
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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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