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Volunteer Advocate
cf insights cf insights

Explaining CF to those around you

Often, the best experts of cystic fibrosis are those living with or caring for someone with CF. But how do you explain the complexities of this disease to someone who’s never heard of it before?

  • “It is an invisible condition. I look healthy but I am not. I will die from CF if a cure is not found. I have difficulty with physical activities due to the buildup of mucus in the lungs that make breathing difficult. It is like swimming and drowning except you can’t get out of the water to save your life.” Liam Simpson, Lives with CF
  • “When people aren’t sure what CF is, I usually just explain that it is a lung and digestion disease. It feels as if you have sticky stuff in your lungs which makes it harder to breath and it feels like you are breathing through a straw. The digestion part affects how I digest food. I don’t produce a certain enzyme that helps to absorb nutrients and fat. I have to take these enzymes before I eat to make sure I don’t get a sore stomach. However, I do get to eat lots of food!” – Jordan, Lives with CF
  • “I ask people to think about the worst cold/flu you’ve ever had, and to image that it never gets better. In fact, it gets worse… (despite the daily medications, IV’s, and physiotherapy) to the point that you can no longer eat, sleep or go about your day-to-day living without struggling to breathe. It is like having a band wrapped around your chest, slowly tightening over time. You can’t take in a deep breath in no matter hard you try. It’s scary and frustrating!” – Brenda Chambers-Ivey, Lives with CF
  • “I usually just tell people that it is a genetic disease that primarily affects the lungs and digestive system (and let’s be real, that barely scratches the surface of what living with CF is all about). I’ll then expand my explanation based on who it is, what the context is, and what questions they have.” – Megan Parker, Lives with CF
  • “I offer that CF is a genetically inherited and non-contagious disease that can affect many bodily systems, largely the respiratory and digestive systems in my case, for which there is no cure. The Cystic Fibrosis gene causes the impairment of movement of salt into and out of cells (causing variety of issues). It affects people differently and people effect on it differently. Meaning, one’s approach to treatment and care can be varied by level of compliance. I try my best every day for reasons of love, my perspective and because of all the hard-working people in the CF community and those who have walked before me.” – Alex McCombes, Lives with CF
  • “Cystic fibrosis is a fatal genetic disease. This means I inherited it from my parents, and you won’t catch it from me because I’m coughing. Why do I cough so much? I cough because my lungs are unable to secrete salt the way yours do, and so mucus fills up my airways. This makes it hard to breathe, and also plays host to bacteria that make me sick and cause scarring of the lungs. It also affects my digestive system, and really every other organ to a certain degree.” – Chelsea Gagnon, Lives with CF
  • “I usually say it is a genetic disease that affects the mucous membranes; specifically the respiratory and GI systems. We don’t absorb salt properly which normally would thin mucous secretions. It creates perfect breeding ground for infection and causes blockages which leads to poor nutrition and infertility.” – Jess Best, Lives with CF
  • “We explain to others that it is a deadly genetic disease. One that affects Matthew’s lungs and pancreas. He does treatments daily to thin out and move sticky mucous in his lungs to avoid infections and he takes enzyme pills with food to help his body absorb nutrients. But if we are talking to kids we say: we do physio to help keep the bugs out of Matthew’s lungs and enzymes to help his tummy!” – Gillian Maramieri, mother to CF champion Matthew
  • “A disease that mainly affects the digestive system and lungs. CFers have a buildup of thick sticky mucous and it’s hard to clear. They appear like “normal” people, but what most don’t see are the hours spent doing treatments and physio, visiting doctors, having X-rays and taking several medications on a daily basis.” – Trish Vendittelli, mother to CF warrior Sloane
  • “I explain CF as my kryptonite, to look at me you have no idea what is going on inside. I tell them that it is a lung disease that affects almost all of my other organs in some way, and impacts my life dramatically. It is because of CF that I now have diabetes, osteoporosis, cataracts, as well as permanent scars both physically and mentally. But it is also because of CF that I refuse to accept the word fail, I refuse to let CF define me but rather that I define CF.” – Meaghan Macrury, Lives with CF
  • “Simplistically I explain it’s predominately a lung condition where I’m clogged up with mucous, making it hard to breathe and causing a lot of coughing and wheezing. I have used the straw analogy to some if they feel inclined to see how it would feel. If there is time I do go into the other affects (pancreatic involvement etc.) but for the quick and easy version I ask them if they know someone who might have Chronic Obstructive Pulmonary Disease (COPD) as this tends to be a more prevalent and might help to shed light on explaining things.” – Jim Best, Lives with CF