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.
After a double-lung transplant, I realized I needed to take care of myself to be a good mother to my son.
October 2, 2019
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The coughing, the nebulizers, the pills, the doctor's appointments, the needles, hospital stays, peripherally inserted central catheter (PICC) lines, surgeries, fevers, fatigue, and so much more -- cystic fibrosis requires so much physical and mental
strength and bravery. I thought my journey through lung failure, transplant, cancer, and chemotherapy would be my toughest fight yet. I was wrong of course. What I've heard my whole life, that motherhood is the hardest job you'll ever have, is true.
I have physically and emotionally endured more than I ever could have imagined. But nothing compares to the beauty, love, sacrifice, and struggle of motherhood. My mom taught me from the very beginning that there were lots of ways to build a family. I
had secretly always wanted to be pregnant, give birth, breastfeed, and raise three kids. But deep down I knew I'd have to find a different path to motherhood.
At age 25, after talking to my family and my doctor, I decided that I wasn't ever going to carry a baby. When I met and fell in love with
my husband, Adam, I told him from the beginning that I wanted a family but, similar to other aspects of my life, we would need to go the unconventional route.
With the blessing from my CF care team, I went through in-vitro fertilization (IVF). One year, three embryo transfers, and two different surrogates later, we were pregnant.
As Bryce grew bigger and stronger in Kim's tummy, my lungs grew weaker.
By the time Bryce was ready to come into the world, my lungs were ready to retire. I was too sick to be there for his birth. The first person he met, the first person to hold him, the first person to kiss him was not me.
I waited close to 50 hours to meet my boy. It was the longest, darkest two days of my life. But man was it worth the wait!
Four weeks later, I received my life saving double-lung transplant. Of course, being sick, on oxygen, and having a fever was NOT how I envisioned starting things off with Bryce.
But yet again, life reminded me how little control we have over our lives at times.
The night I got “the call,” I kissed Bryce good night and a wave of fear washed over me. “What if I don't see him again?” But the other part of me knew I would never be the kind of mother he deserved without new lungs. My transplant recovery was nine days from the operating room to discharge. I pushed through the pain and exhaustion because of Bryce. He was starting to try to smile and that was a first I was not willing to miss!
Fast forward: Bryce is four and half years old now. He is the most beautiful, tenderhearted soul. He loves T-ball, basketball, swimming, the beach, and Cheerios! My determination and passion to not just live but to thrive has always been there from the
day I was born. But, as a mother and organ recipient, I feel even more responsibility to take care of myself. Motherhood and chronic illness demand two opposing mindsets. I put the needs of my child first. It's instinctual. When Bryce cries, when
he's hungry, when he's scared, when he's sick, when he wants to play, or sleep, or test my patience … no matter what's going on with me, the world freezes and nobody else matters but him.
But my responsibilities as a cystic fibrosis, diabetic, and lung transplant patient, include full night sleeps, resting when I am tired, eating regularly to keep my blood glucose
steady, staying away from sick people, avoiding crowded places especially during flu season, and traveling to see my care team at least every three months.
I am constantly being pulled in two different directions. I have missed Bryce's first day of pre-K while in the hospital and I have taken him to the pediatrician when he was sick. As a mother and a patient, neither of those scenarios were easy for me.
After sinus surgery, I wasn't able to lift him for 4-6 weeks. He cried and wanted me to hold him and when I put him to bed, I cried in the shower.
Ultimately, it takes a village. My husband, our parents, siblings, aunts, uncles, cousins, friends, and total strangers have all helped raise Bryce.
After four and half years of love, adventure, giggles, potty training, surgeries, fevers, ear infections, nose drips, and birthday parties, I have decided that ultimately what Bryce needs the most is ME.
He needs me to be alive and healthy so I can love, guide, and support him for as long as possible. It's with a very heavy heart that I have to watch other people care for him when he is sick, leave him so often to go to my clinic visits, stay in bed while
someone else drives him to school, or drag him to a lab appointment when his friends are at the park.
Some days I still cry in the shower, but most days I know deep inside that I am a good mother and I am a good patient. They don't have to be mutually exclusive. In fact, CF has made me a better mother and being a mother has helped be a better patient.
Through my struggles, I have learned resilience, compassion, patience, persistence, and gratitude.
I can't imagine my life without the struggles of CF, but I also can't imagine my life without Bryce. Luckily, I don't have to. To all the CF patients who are thinking about becoming a parent someday, it is a deeply personal decision, one that I hope includes
your partner, your family, and your CF care team because it's going to take a village!
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Adult with CF
Andrea has been a patient advocate, peer mentor, and guest speaker at CF Foundation fundraisers for more than 20 years. After earning a bachelor’s degree in psychology from the University of Florida and a master's degree in mental health counseling, Andrea worked for a few years before her health forced her to go on disability. In May 2015, Andrea received her life saving double-lung transplant. She lives in Florida with her husband, Adam, son, Bryce, and dog, Brooklynn. Andrea loves to spend time with her family and friends, go to the beach, travel, and exercise. She attributes her good health to her amazing support system and positive attitude.
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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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