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 university first shut down in March because of COVID-19, I thought our quarantine would be temporary. Now I am contemplating a fully online fall semester. I'm calling on all colleges to continue to accommodate the needs of their high-risk students.
August 19, 2020
Wearing a Mask is Not About You
Honoring My Partner’s Legacy
As a rising junior in college with cystic fibrosis, I've had my fair share of ups and downs -- from my first semester being told to “drop out if I need accommodations,” to transferring
and finding my best friends in my sorority sisters. Although every year of college has brought difficulties, this year is going to be a new challenge: living as a high-risk college student through a pandemic.
This past spring semester was my favorite, only to be cut short in March due to COVID-19. I had good grades, held two positions in my sorority, had great friends, and an internship with an amazing company; and Trikafta® allowed me to live a fuller life. Come spring break, everything took a quick turn. When my university announced we would extend our break another two weeks, we thought, “No big deal, we'll just quarantine
for two weeks.” The office I interned with was completely understanding of my CF, and they transitioned everyone to work-from-home for their own safety. After a few days of quarantining, I realized the severity of the situation as the country went
into total lockdown. I kept hearing the term “high risk.”
Most of the time it was in reference to elderly people, and I soon came to the terrifying realization that as a high-risk college student, I am part of a minority, a status that put me low in the list of priorities for universities deciding whether to
As the semester went fully online, my doctor said, “You know you'll be online next semester too, right?” I laughed and said, “There's no way it would be that bad by then!” Boy, was I wrong! In Texas, we are seeing increasing numbers, and the decision
of many universities to reopen is not going to help. The college I left after my first semester planned to have classes in-person, and high-risk students have to petition if they want to take classes online. I've heard from multiple students that
the university is denying most petitions (yes, the same school that told me I should drop out if I needed accommodations). Thankfully, they added more virtual options.
My current university, which had been amazing with accommodations, told us on July 31 about its plan to have 95 percent of its classes online, starting on August 24. It was too short notice for many students to decide whether to move back or try to cancel
their leases. It's short notice for some high-risk students to schedule a telehealth appointment with their clinic to discuss the safest option for them. Our pulmonologists are insanely busy right now -- some of them have been called in to treat COVID-19
patients. Before my school announced its plan, I knew I'd be fully online.
Why even leave the five percent risk for in-person classes when your state is a hot spot? Students have the option to choose virtual for any remaining in-person classes, but after Thanksgiving no one will come back to campus, and we'll be 100 percent
virtual. The way cases are trending, I'm guessing we'll be 100 percent virtual before then.
In addition to classes changing, we've also had to make major changes to the way our student organizations are run. My sorority has gone completely virtual for the semester, and I couldn't be more grateful given the circumstances. All my sisters and the
executive board understand that I am high risk and haven't put any pressure on me to attend any of the socially distanced events over the summer, such as filming videos for virtual recruitment. As a member of the executive board and programming council,
we have been working endlessly to make sure that all our sisters feel included, safe, and supported during the pandemic. Thankfully, this is an area of being a high-risk college student in which I don't feel forgotten or left out.
Besides just asking universities to be mindful of their high-risk students, I also want to call on companies to be open and welcoming to their interns/young employee's needs (and always ALL employees).
Due to the pandemic lots of students have lost their internship opportunities and had limited chances to apply for upcoming internships. Fortunately, my internship could be completed virtually, and I was offered a part-time position for the summer --
which I love -- but not all students are so lucky. Until there is a vaccine or cure for COVID-19, high-risk students will likely have to enter the workforce virtually, giving us fewer opportunities. I hope that many companies will offer virtual options
to their students.
I am incredibly grateful to be able to take my classes online and be employed with such an open-minded company I feel safe with; I hope all students find similar experiences.
Even though we are high risk, we still need to have access to equal education and experience before we graduate. It is the job of universities and employers to ensure students' and employee needs are being met. Colleges: I encourage you to always prioritize
high-risk students as the semester goes on and changes are needed. And to students: Remember to always be your biggest advocate!
Interested in sharing your story? The CF Community Blog wants to hear from you.
Adult with CF
Betsy was diagnosed with CF when she was 1 ½ years old. She lives in San Antonio, Texas, with her two sisters, parents, niece, and a puppy. Betsy is a junior studying marketing with a minor in finance at the University of Texas at San Antonio and is a
member of Zeta Tau Alpha. She is involved with both the national Cystic Fibrosis Foundation and its local chapter and is a member of the Foundation’s adult advisory committee. Since starting Trikafta®, she has been able to live a freer
lifestyle and hopes it allows her to do more in the future. You can find Betsy on Instagram @betsysulli and LinkedIn.
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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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