Don’t Let Our Differences Divide the Cystic Fibrosis Community

“Cystic fibrosis is a genetic lung disease.”

That’s an accurate statement, sure. But it doesn’t reflect the diversity of patient cases — the myriad mutations that cause each case of CF, and the unique medical contexts that shape those cases. And, as all CFers know, the mutations affect much more than just our lungs. After all, the disease’s name refers to cysts and fibrosis (scarring) on patients’ pancreas rather than their lungs.

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.

Sadly, I’ve noticed generalizations make their way into the CF community as well. Some patients put others down by alienating CFers who don’t exhibit certain symptoms or share particular 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.

Here are some stark differences I’ve noticed during my time in the CF community:

• Some CFers are pancreatic insufficient and cannot gain weight easily. Others have a high-functioning pancreas and effortlessly hold stable weights. Others are even overweight.
• Some CFers die in childhood. Others live to see wrinkles gather on their face.
• Some CFers have severe symptoms of disease in infanthood. Others aren’t diagnosed with CF until their middle-aged years.
• Some CFers go to the hospital or pulmonary clinic every six months. Others go every week or more.
• Some CFers get CF-related diabetes (CFRD). Others have stable blood sugars, even when on anti-inflammatory steroids.
• Some CFers run races with low lung function. Others with the same statistical lung function are on supplemental oxygen and can barely walk.
• Some CFers don’t want to have lung transplants when at end-stage. Others pursue it without hesitation.
• Some CFers don’t like to interact with other patients at all. Others mostly have only CF friends.
• Some CFers have anxiety and/or depression because of their illness. Others don’t experience mental illness symptoms.

What other differences within the CF community you’ve noticed?

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Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.