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.
The pandemic made me a homeschool teacher last spring. After deciding we would continue homeschooling our kids this fall, we agreed we needed to shake things up. Gone was the cluttered kitchen table where we were doing lessons before, and in its place is a “classroom” we made in our garage.
September 4, 2020
How Being a Black Woman Shaped My CF Journey
Putting Convenience Before the Vulnerable
As a mother of a child with cystic fibrosis, a part of me has been training for this pandemic for years. Every
winter since my son, Vance, was born, we have taken extreme caution when leaving the house and inviting people over. The week before the “shutdown” I had already pulled Vance from school because he had another high fever and cough. After a week of
blood tests, a lung X-ray, antibiotics, and increased nebulizer treatments (you know the drill), we were exhausted. Then the shutdown happened. I have to say, at first this made
me feel less alone. We have had to isolate in the past while enduring that fear of missing out (FOMO) feeling we got while seeing our friends on social media living their ”best lives.” So, it was nice to have company. But of course, the inevitable
happened: remote learning.
To be honest, I don’t consider myself a good teacher. I would say I am a good mother but teaching my child how to read -- no, nope, I was not born with that type of patience. But hey, I said to myself, “I can do this, I can make this so fun and so awesome.
We’ll learn using nature and recipes -- this going to be great.” Well, my cute ideas lasted only about 45 minutes, and that was when I realized I was in trouble. The next few months were challenging to say the least.
But, like all CF families, we do difficult things every day -- usually before most people wake up in the morning. I knew we could get through this.
I know I am his mother, and that Vance is very smart and enjoys learning, but those three months of remote learning (aka “Did I miss his Zoom meeting?!”) were INTENSE. Vance finished first grade and although he is not quite reading the encyclopedia, he
learned a lot -- and so did I. I wasn’t planning to have Vance or my other son, Hayes, go back to school in the fall, but when the reality really sank in all I could do was think … “how?” (Do you know that emoji with the straight mouth and wide eyes?
That was my face for about a month.)
Then I realized the best thing I could do was act. Now my husband, Grant, and I are not “house project people.” We don't watch house project shows, and other than painting and when Grant fixed the garbage disposal, we typically call a professional. But
since we are isolating now, we thought a family project would be a great distraction. So we decided to convert our messy garage into a classroom.
Part of the frustration of homeschooling was our dining room was the classroom; the table was covered in worksheets, random Legos, and broken crayons -- and we still have no idea where the pencil sharpener went. If we were going to homeschool again, we
were going to be prepared. So, we hung sheetrock, spackled, sanded, painted, stained the floor, moved furniture like Tetris, decorated, and BAM we have a classroom! If you are wondering if this will change my teaching abilities, probably not; but
getting into action has helped me feel in control, which is what I needed during this time. As CF parents we know we can't change what’s going on, but we can work on making the experience better. I must say, Grant and I are very impressed with our
work, but it definitely has that DIY look.
Although it’s far from perfect, we have a space to learn, to bond, and to make the best of this, just like cystic fibrosis has taught us to do over the past seven years.
Now that we’ve assembled our homeschool space, here are some tips for making a space of your own:
Interested in sharing your story? The CF Community Blog wants to hear from you.
Mother of child with CF
Jenifer Sanregret is mother to her son Vance, who was born with cystic fibrosis. She is a Texas transplant living happily in Central California with her husband, Grant, and sons, Vance, 7, and Hayes, 3. She is a former wedding planner/entrepreneur currently working toward a paralegal degree. She is a CF advocate and has helped organize multiple events for the Cystic Fibrosis Foundation. Her hobbies include learning how to play the ukulele and surviving the 2020 quarantine with a sense of humor.
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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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