Q: What do you hope to accomplish with this film?
A: The intent of this film is to empowerment and inspire to the CF community, as well as altering the common perception of the disease among the general public. We want to shift the paradigm of CF from that of pity and suffering to positivity and triumph by bringing attention to the many people who are living successfully and pushing beyond perceived limitations.
Q: Why do you feel this film is important?
A: The unfortunate reality is that currently patients and families are primarily exposed to facts and statistics that paint a limited picture of living with CF. Too commonly, this picture can result in people giving up on themselves, and neglecting crucial care to their health care needs daily. This results in poorer health outcomes. By showing the CF community another possibility that exists through individuals who thrive by being in control of their CF, we hope to not only change the face of CF, but also contribute to the hope and empowerment needed for more people to live successfully until a cure is found.
Q: How did this project come together?
A: A relationship between the Cystic Fibrosis Lifestyle Foundation and the Essential Image Source Foundation was sparked in 2006, and resonated for several years until developing a formal collaboration in 2011. In 2010, CysticLife and the Cystic Fibrosis Lifestyle Foundation began discussing their common passion, empowering CF patients to lead fit and active lifestyles, and decided to join forces to bring this passion to the community in a new way. Since April 2011, all three entities have been working together on the project.
Q: How were film subjects chosen?
A: Subjects were referred to us by others in the community, including health care providers, patients, and family members. From there we selected a diverse group of people living xtreme to make sure we captured the depth and breadth of what is means to live xtreme.
Q: I know someone with CF who is living xtreme. Can I refer them?
A: Click here to refer your candidate to us.
Q: Will everyone referred make it into the film?
A: Unfortunately due to number of people living xtreme in the CF community, we can’t feature everyone. However, we are working to capture as many stories as possible!
Q: What is cystic fibrosis?
A: Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system. A defective gene causes the body to produce unusually thick, sticky mucus that clogs the lungs and leads to life-threatening lung infections; and obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food. People with CF can have a variety of symptoms, including very salty-tasting skin; persistent coughing, at times with phlegm; frequent lung infections; wheezing or shortness of breath; poor growth/weight gain in spite of a good appetite; and frequent greasy, bulky stools or difficulty in bowel movements. (According to the Cystic Fibrosis Foundation).
Q: How many people does cystic fibrosis affect?
A: 30,000 children and adults in the United States have Cystic Fibrosis (70,000 people worldwide). Being a carrier is far more common, however. More than 10 million Americans are carriers of one mutation of the CF gene. Among Caucasian Americans, about one in 29 people carry one mutation of the CF gene. In other races or ethnicities, one in 46 Hispanic Americans, one in 65 African Americans and one in 90 Asian Americans carry a mutation of the CF gene. (According to the Cystic Fibrosis Foundation).
Q: How do cystic fibrosis patients care for themselves?
A: Cystic fibrosis patients take care of themselves in a variety of ways including taking pills with meals that help digest their food; taking multi-vitamins; doing airway clearance at least once, to four or more times a day; inhaling various medications through a nebulizer; and doing intravenous antibiotics in the hospital or at home when sick.
Q: How can I get involved?
A: If you are interested in helping with the project, please email amanda@cysticlife.org
Q: How can I donate?
A: You can donate by clicking the “Donate” button on the top of the Homepage, or for more information regarding donations, please email amanda@cysticlife.org
© LivingXtreme.org 2012