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.
When my son Sam passed away at the age of 9, people told me that the love we shared would never die. But, it wasn't until I received an unexplainable gift on the first Mother's Day after his passing that I truly believed it.
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The universe is filled with unexplainable mysteries. Here is one of them.
It happened the year after our son Sam passed away from cystic fibrosis at the age of 9. After his memorial, well-meaning folks warned us that the holidays might be especially difficult, so I steeled myself for the big celebrations -- Thanksgiving, Hanukkah,
Christmas, and Passover. Our friends were supportive, and we made it through pretty well. I hid behind the crowd of tradition and turkey, songs, and Seders.
But, I was completely blindsided by Mother's Day. This was a different kind of holiday -- intimate, and personal to my husband, John, and me. This was about our family, our children, our private circle of love.
It hurt just thinking about those earlier Mother's Days. The sound of banging pots in the kitchen downstairs, lots of giggling and shushing, heads popping up over the top of the stairwell to our bedroom, three beaming faces holding a tray with breakfast
eggs fried sunny-side-up and toast with jelly, handmade cards, a bouquet of flowers from our garden … It was almost unbearable to remember.
You never really believe your child's death is possible, even with all the indications of decline -- not until it actually happens. Maybe not even then. The summer before he turned 9, our family drove north to the mountains for a short vacation, but immediately
learned that Sammy's lungs could no longer handle such high elevation with so little oxygen. We had no choice but to return home, all of us stunned and disappointed. In December, his lung collapsed, and a bronchoscopy revealed massive damage. In April,
Sam was put on hospice.
By mid-May, it did not look like he would be able to go back to school. He'd already been home for several weeks. Friends visited, and he looked forward to each one, planning to trade baseball cards with a school buddy the Saturday before Mother's Day.
But something came up, and his friend never showed. The next day, Mother's Day, Sam slept through the whole day. Two weeks later, he was gone.
In his memory, John planted a special native plant, a Matilija poppy, at
our house. Native to two small areas in Southern California, it seemed happy, but -- like many hardy, drought-tolerant plants -- was pretty scrubby-looking for most of the year. That was okay, though. It was one of our favorites. Like Sam, it would
have a short but spectacular bloom. Nature, with its cycles and renewals, brought us the comfort we needed so badly.
But then, one year later, I was walking blindly down the long driveway to the mailbox in a sorrowful state, wanting my boy back, knowing that was not to be. At his funeral, people had told me “the love never dies.” True, my love for him had only grown
in the year since. But what about his love for me? Was it still somewhere in the Universe? Love that is shared has a circuitry to it, an energy that powers everything, and I was missing his love, feeling the circuitry broken. We would all miss Sam's
smiling face tomorrow. All I could think of was how much it would mean to hear his crazy laugh one more time, or get one of his handmade cards.
I stuck my hand in the mailbox and pulled out the mail. There was an envelope with a return address I didn't recognize. I ripped it open as I walked down the long driveway and stood reading it in front of the Matilija poppy.
Inside the envelope was -- no, how could this be? There was a Mother's Day card from Sam.
He had made the card at school the year before, with a homemade rainbow pin, signed “Sam” on the back in his unmistakable handwriting. And wait -- there was a note from his teacher. “Dear Sam,” she wrote. “Here is your rainbow pin! It looks great. The
card is the one we made in class. You can add things to it. Hope you're doing well. I miss you. No one can make up puns and corny remarks as quickly as you. With love, Miss M.” I carefully removed the pin from the card and wore it the whole day.
Six months later, I learned that his schoolmate had planned to bring the card with him that day they'd set to trade baseball cards. His mother kept it, and mailed it to me the following year. So, that mystery was explainable.
The unexplainable mystery was the bouquet of flowers Sam sent along with the card. For only then, looking up from reading the letter, did I notice the Matilija poppies had finally burst into glorious bloom, their huge blossoms of pleated white
petals looking like eggs fried sunny-side-up, waving in the wind. I laughed out loud to see them. The eggs, the card, the bouquet I wanted? I got them all. And in my laughter, I could hear his. What a gift that was.
That year, and every Mother's Day thereafter, those Matilija poppies bloomed. That's how I know beyond the shadow of a doubt that the love we both shared will never die.
And how and why that is? It's just an unexplainable mystery, truly. This is my “Thank You” note to the Universe.
Mother of a child with CF
Jane lives with her husband, John, in Vista, Calif., where they brought up their two sons, Sam and Steve. Sam was diagnosed with cystic fibrosis at 5 weeks old in 1980, and lived abundantly for nine years. After 1992, Jane taught middle schoolers at a public visual and performing arts magnet school for many years. Today, she is a ghostwriter, helping others write their memoirs, and is now sharing her own story with you, in healing and wonder, pain, and love. In her free time, Jane enjoys camping, backpacking, gardening, reading, piano, and staying active with her family.
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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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