What Healthy People May Not Realize About Cystic Fibrosis

Wikipedia defines cystic fibrosis (CF) as “a genetic disorder that affects mostly the lungs, but also the pancreas, liver, kidneys, and intestine”. While this is an accurate definition of the condition, it does not represent the entire range of patient cases. It does not reflect the unique ‘triggers’ that lead to each individual case of CF, the various symptoms that differ among patients with CF, as well as the medical factors that shape each individual case of CF.

“One of the most frustrating things in my medical care was when I’d have a doctor who believed each case of CF was exactly the same and therefore needed to be treated exactly the same. Am I the only one who was put on insulin just because a doctor assumed I had diabetes? The reality is that we are all affected by the disease at varying degrees, so each of us needs different styles of treatment” wrote Brad Dell, columnist.

Unfortunately, there are some individuals with CF who do not understand or do not attempt to understand other individuals’ cases due to differences in particular symptoms or beliefs. “At times, we get competitive over “who has it worse.” But we need to be there for each other. We need to recognize that each patient is unique and suffering in some way. Many of us already feel like outsiders in the “normal world.” We shouldn’t have to feel like outsiders in the CF community, too” wrote Dell.

There are several differences that can be seen among patients of the cystic fibrosis community. You may have noticed them as well. They include the following:

• Some individuals with CF maintain a healthy weight, while others with the disorder are overweight or cannot seem to gain weight
• Some individuals with CF live longer and well into a mature age, while others with the disorder pass away during childhood
• Some individuals with CF go to the hospital every 6 months, while others with the disorder need to go every week
• Some individuals with CF have reduced lung function, yet are able to enjoy physical activities such as running, while others have reduced lung function, yet can barely walk and require oxygen therapy
• Some individuals with CF are not diagnosed with the disorder until they reach middle age years, while others start experiencing severe symptoms during childhood
• Some individuals with CF wish to pursue lung transplants even at the end-stage, while others do not want to undergo lung transplantation or are hesitant
• Some individuals with CF have stable blood sugar levels (even while on certain medications), while others develop CF-related diabetes (CFRD) because of their disorder;
• Some individuals with CF do not experience any mental health symptoms, while others experience symptoms such as anxiety or depression because of their disorder
• Some individuals with CF do not like to interact with others who have the disorder, while others only have friends with CF

Yet, what about the differences between individuals who are healthy and individuals who have CF?

Columnist Brad Dell, coping with CF himself, shares his insight into the perceived differences between individuals who are healthy and individuals with CF (some of which are surely things that you want others to know if you have CF).

Read on to learn more.