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.
Today, my son Eric turns 24. He has his own house. He has a career in finance at Merrill Lynch. He has cystic fibrosis.
July 17, 2015
Stay Mindful, Be Smart: How One Adult with CF Combats Germs in Daily Life
When Eric was young, he was eager to be independent.
As a toddler he'd get his own cereal bowl and spoon from the height friendly bottom drawer…and learned to swallow all his multiple pills in a single gulp.
As an elementary school student, he'd set his own 5:30 a.m. alarm…get up, get dressed, get out his meds and do his breathing treatments.
As a pre-teen, he taught himself how to ride a 4-wheeler, a snowmobile…and taught himself how to give his body insulin shots.
As a high-school student, he was responsible for his own college applications, and was an entrepreneur in his own landscaping business. He also started being responsible for making his own pulmonologist appointments.
As a college student, Eric was responsible for balancing a full-time job, full-time school, and took on the responsibility of driving and admitting himself to the hospital when he was in need of a more aggressive intervention due to a flare-up with his cystic fibrosis.
When Eric was young, we encouraged his independence.
I was his safety net as I watched him balance his life and cystic fibrosis.
While he soared in his independence, I had a hard time watching him fall. Perhaps he didn't clean his nebs as often as I thought he should. Perhaps he didn't take all the pills at the times I thought he should. Perhaps his attitude of independence was a little hard to handle. Sure he was growing up but he was not yet grown.
In high school we began to have conflicts over his independence and our conversations sounded like this:
“Don't you think you should see the doctor about this or that?” I'd ask him.
“Ma, I got it.”
“You forgot to mention this or that to the doctor.”
“Don't you think you should do your breathing treatments now?”
“Did you order that medication from the pharmacy yet?”
“I'll stay with you in the hospital, you know, just in case.”
“Ma, …I got it.”
The conflicts grew with his independence. He was responsible for his life but not to the level I had mastered. I had given my life to take care of his and I was better at it than he was. After all, he was fairly new to the complete responsibility of it all and I was a master at his life; his health.
Ahh, lightbulb moment.
His life. Not mine.
His health. Not mine.
Though he will forever be "my everything," my life, my tangible heart walking around on this earth…I'm learning that his life belongs to him.
Independence doesn't come without a little growing pains, tears and a few silent treatments.
There were tears streaming down my face when he asked me to leave him alone in the hospital.
There were angry words exchanged when I had to immediately run to the pharmacy because he was out of a certain medicine or I had found an unused bottle of vitamins.
There were silent rides home as he'd refuse to talk to me about what I had divulged to the doctor during an appointment.
But we never stopped working on our ever-changing relationship.
We discussed boundaries.
We discussed fears.
We discussed both our new found independence.
I understand and trust that though he may fall, Eric is perfectly capable of being in charge of his life; all aspects of it.
As long as I live, I will drop my life in a second if he ever needs me…but only if he asks.
Last month, he asked if I wanted to take a ride with him to his next doctor's appointment. I sat in the waiting room as he introduced me to his adult care team one at a time. Not surprising, they were amazing and thought the world of him.
On our way home he asked if I wanted to grab lunch. Over a ton of sushi we talked about his life, his job, his girlfriend, and yes, his health.
When the server brought the check over I attempted to grab it. He reached for the bill and said, “Ma, I got it.”
Yes, he does.
He's got it and I couldn't be more proud of the man he has become.
Mother of an adult and child with CF
Margarete is a public speaker, a freelance writer, and the author of Beyond Breathing and See You at Sunset. But, most importantly, she is a mother of two children who were born with cystic fibrosis: Eric, now 27, and Jena, who “moved
up” to heaven in 2006 at the age of 13. Margarete has been a dedicated volunteer for the Cystic Fibrosis Foundation since 1991. She has served as National Leadership Council Member, National Public Advocacy Co-Chair, and National Volunteer Leadership
Co-Chair, as well as chairing local events. As empty nesters, Margarete and her husband, Marc, continue to raise funds and awareness for the Foundation by doing annual Xtreme Hikes, Golf Events, and galas, all in the hope of one day becoming grandparents
to Eric and his wife, Kourtney’s, children. For more about Margarete, you can visit her website.
Share this Post
This site contains general information about cystic fibrosis, as well as personal insight from the CF community. It is not intended as a substitute for treatment advice from a medical professional. Consult your doctor before making any changes to your treatment.
Follow Us On
With more than 70 chapters and offices across the country, there are plenty of ways to get involved.
Cystic Fibrosis Foundation
4550 Montgomery Ave.
Suite 1100 N
Bethesda, MD 20814
800-344-4823 (toll free)
Sign up for our emails