What is cystic fibrosis?
Cystic fibrosis is a genetic disease that causes a buildup of thick, sticky mucus in the lungs. CF causes ongoing lung infections and makes it hard to breathe over time. CF also affects other parts of the body, including the pancreas, and can make it difficult to digest food and maintain a healthy weight.
What is life with CF really like?
Five Feet Apart is just one representation of life with cystic fibrosis. CF is a complex disease and the types and severity of symptoms can differ widely from person to person.
As a work of fiction, the film portrays only a handful of individuals' experiences with CF and may be dramatized for the sake of the story. Every person with CF is different and we know that the progression of CF and challenges associated with the disease are unique.
At the CF Foundation, we're focused on highlighting the real lives of people with CF. Visit our blog to read their stories.
If you have CF or are a parent of a child with CF, we want you to feel ready to talk about what you see in the movie.
Why must people with CF maintain a distance of 6 feet between each other?
Germs can spread as far as 6 feet when someone coughs or sneezes, landing on surfaces or in another person's eyes, nose, or mouth. That's why it's important for people with CF to stay at least 6 feet away from others with CF and anyone with a cold, flu, or infection.
For people with CF, being close to others with the disease puts them at greater risk of getting and spreading dangerous germs and bacteria. This is called cross‐infection. Not only are these dangerous germs difficult to treat, but they can also lead to worsening symptoms and faster decline in lung function.
If people with CF can't physically be together, how are they supposed to connect?
People with CF have developed robust online communities through the use of social media networks and video chatting to forge closer connections in real time without having to meet in person.
Recognizing that no one knows what life with CF is like better than those who live with it every day, the CF Foundation created a host of programs to facilitate meaningful connections among individuals in our community, from virtual events to peer mentoring.
- CF Peer Connect is a one-to-one peer support program for people with CF and their family members age 16 and older. This program allows people to talk with and learn from someone who is also affected by CF and has gone through similar experiences.
- Community Conferences designed by and for adults with CF, including BreatheCon, CF FamilyCon, ResearchCon, and NextBreath, provide an opportunity for the CF community to connect, share, and learn from peers through open and honest dialogue.
- Chapters serve as a critical hub for the community, providing access to resources, connecting families with similar experiences, and holding events that bring people together and raise funds in support of our mission.
What is the current life expectancy for someone with CF?
Life expectancy for people with CF has increased dramatically since the CF Foundation was formed in 1955. Today, many people with CF are reaching milestones we never thought possible, such as finishing school, starting families, or beginning careers. However, people with CF still face significant challenges -- including frequent hospitalizations, complications, and treatment plans that can take 2-3 hours a day -- and too many lives are cut far too short.
Based on the most recent CF Foundation Patient Registry data, the life expectancy for people born between 2013 and 2017 is 44 years of age. This means that half of the babies with CF born today are predicted to live to be 44 years old.
Why do people with CF get lung transplants? Does someone who had a lung transplant still have CF?
A lung transplant is a surgical procedure in which a person's unhealthy lungs are replaced with healthy lungs from a donor. More than 200 people with CF undergo lung transplantation every year.
Although the transplant surgery replaces the damaged lungs, people with CF are still affected by the disease, including complications in their digestive tract and upper respiratory tract, and mental health issues associated with chronic illness. In addition, they are susceptible to a variety of infections that can threaten long-term survival.
Does the “6-foot rule” still apply to people with CF after they have a lung transplant?
Yes. People with CF who have undergone a lung transplant still can get and spread dangerous germs among others with CF because these germs can remain in their upper respiratory system, including the sinuses. Because of the risk of cross-infection, it is recommended that people with CF take the same precautions they took before lung transplantation.
The movie discusses people being denied for lung transplantation due to B. cepacia. If someone has B. cepacia, does that mean they can't get a lung transplant?
Many transplant centers have different policies about what they consider to be barriers or contraindications to transplant. Although some transplant centers may not accept people with certain health conditions like B. cepacia, others may.
What is a clinical trial?
Clinical trials, which test potential drugs and therapies, help researchers understand how potential treatments work in people with CF and whether they are safe and effective. Whether or not the trial is successful, participating in a clinical trial gives researchers valuable information so that they can refocus their efforts on more promising therapies.
As with anything, there are risks and benefits to participating in a clinical trial. Before you enroll, a research coordinator will have a conversation with you and give you an informed consent form that explains the clinical trial in greater detail. This ensures that everyone who participates in the study understands the trial's purpose, how long it will last, the responsibilities of participants, and the potential risks and benefits. In addition, clinical trials undergo an extensive review and safety process, which you can learn about on cff.org.
In many clinical trials that test the effectiveness of a medication, some of the participants receive the medication in question. Some receive a placebo, a pharmaceutical preparation that contains no active substance (a sugar pill) and looks like the drug that is being tested.
People with CF share why they joined a clinical trial on the CF Community Blog:
- Why I Decided to Join a Clinical Trial on My 12th Birthday
- Participating in a Clinical Trial Is Empowering
- The Question to Ask Yourself When Considering a Clinical Trial
- Why I Took a RARE Opportunity to Help Myself and Others
Many of the characters seem to struggle with mental health issues. How does emotional wellness influence life with CF?
Living with a chronic disease, such as CF, can be emotionally challenging. Although moments of sadness and anxiety due to the uncertainty of health are normal and may come and go, depression and persistent anxiety should be treated as part of a person's overall health and emotional wellness.
People living with CF -- or who have a child with CF -- experience a great deal of stress. Making time for daily treatments, remembering to take medications, missing out on things you want to do, and being hospitalized for an infection all cause stress and anxiety, which affect emotional wellness.
Studies have shown that people with CF, as well as parents who take care of children with CF, are more likely to experience anxiety than people in the general population. People with CF and their caregivers who have anxiety are also more likely to experience depression as well.
How can I help?