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 mother of a child with cystic fibrosis, here's what I wish everyone in our hospital understood about my daughter and her CF care.
March 15, 2019
Let’s Talk About It: Complementary and Alternative Medicines and Supplements
My Experience Improving Care Behind the Scenes
To you, Addie is a patient. But she is my baby. You don't know this, but she has spent the last 13 years enduring medical procedures, appointments, and hospitalizations. When she sees you, all of those memories come with her. Your white coat is a symbol of blood draws, X-rays, pokes, and prods. Please don't take it personally if she gives you the stink eye. I'm sure without the white coat, she'd love you.
When I ask question after question about a medication or procedure, it is not because I'm a pain-in-the-butt mom. It is because I'm exhausted and if I don't write everything down, in 10 minutes that knowledge will have slipped into the black hole of pharmaceutical names, insurance info, and commercial jingles from the 1980s. Please be patient with me. I don't want to mess this up. A little life is at stake.
The reason Addie's screaming and holding onto me before her blood draw is not because she's a bratty preteen who can't handle a little pain.
It's because during the last draw, the nurse couldn't find the vein and being pricked in both arms, three veins, and held down by aides is what she remembers as you come at her with a needle.
You are just an accumulation. Please don't take it personally.
Your eye rolls and sighs, I understand. I do. I would feel the same way if I didn't live it … if this were just another screaming kid of hundreds. Please try to put yourself in her little shoes. They are a size 7. It may be a tight squeeze.
Dear On-Call Pediatrician,
When I phone on a Friday at 5:01 p.m., it is not because I waited until the last minute; it is because my kiddo's fever only spikes at closing time. She was born on a full moon when all hospital beds were full and almost delivered in the hallway. It's just how we roll. I apologize. I would have loved the birthing suite and some pain meds.
When we call in a prescription for a medication we've already run out of, it is not because I want to create an emergency for you. It is because this medication is one of 20, from four different specialized pharmacies, and sometimes I cannot keep it all together. And if I am crabby and panicked, it is not because I'm unappreciative of your hard work. It is because I am mad at myself for not being the mom I would like to be. Please forgive me.
Dear Pulmonologist, Endocrinologist, and Respiratory Therapist,
When we receive bad news from a blood test or culture, I realize you have already given this news to 10 other people before 9 a.m. But it means our life changes from this point on. We have come this far, learned this much and you are giving us new information. You are saying, “Here is another chapter in this lengthy book. Please study, memorize, and perfect this.” Sometimes, it feels like too much. Yes, they're only lab results, but to us, they're life results.
If I could tell you one thing, to newbies and old hats and everyone in between, it is this:
Please just listen.
You have the answers, but sometimes, they are given before you know the question.
I am not challenging you. But I know my kid. We live this life -- we wake up to it and go to bed with it. This disease is like another child in our family. It's ours. We birthed it, we feed it, we care for it.
I have not endured 12 years of medical school and residencies, but I have paid attention to every breath and heartbeat, to each slight fluctuation -- knowing like a sixth sense that warm breeze before the storm. Like memorizing the rhythm of a song, you don't need to be a composer to know when the melody is off-key.
After a year of chronic stomach pain and no relief, I called you for the hundredth time. A gastroenterologist new to the hospital returned my call. I was exhausted from medications not helping and begged for answers. Her response left me speechless.
“You know your daughter. Tell me what to do.”
At first, I was terrified. What do you mean, tell you what to do? Aren't you the doctor? I don't want this power. Here, take it back!
This doctor explained she was also a mother. She asked me what I felt in my gut. I ignored my impulse to make a pun (GI, gut, ha!), mustered up my courage, and said, “I want her admitted today. And I don't want to go home until she's better.”
And that's what we did. Two days letter, she was better. And we went home.
This doctor not only listened, but she trusted me. She knew about the course not taught in medical school or learned in residency.
It is the quiet pause of a song, a flutter of a heartbeat, a mother's intuition. Just listen and you can hear it. Let's listen together.
Elise Free (mama to the amazing Adelaide)
Previously published on The Mighty. Join the conversation on Facebook.
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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