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(Bump) *Not* All CFers Are Created Equal

Posted Aug 12 2008 9:09am
This was originally posted on 3.21.08. I thought this would be a good post to bump back up to the top for those who missed it the first time.

So, after posting about some of our CF friends the past few weeks (I encourage you to go back and read some of the CF-related posts from early-mid March), I've had several people ask me about some of the differences between their conditions and Tricia's. I won't give you any more info about the other CFers, because I haven't asked for their permission to do so, but I will explain some of the differences that can be seen between CFers (again, realize that this info is coming from my own research and education and experience).

Every CFer is different from every other CFer for several reasons:

> There are thousands of mutations of the disease, and each mutation can show itself in different ways in different hosts. Some CFers show symptoms at birth and are diagnosed very early. Some show symptoms for years, but are either misdiagnosed or undiagnosed until later in life. Some show very few symptoms and are never diagnosed.

> CF can present itself it two big ways: Pulmonary (due to increased mucus production) and Digestive (due to a deficiency in pancreatic enzymes which help digest food), and therefore (from what I know), CFers can be divided into 4 categories:

1) Those have both major pulmonary and digestion problems (the vast majority). Tricia falls in this category. These patients have serious respiratory problems as well as serious problems with gaining and maintaining their weight. This is why most CFers (before they become incredibly sick) have to take pancreatic enzymes with every meal/snack (forgetting/refusing to take enzymes can be painful) and can eat a ton of food and always be very thin. These patients will often need both lung and liver/pancreas transplants.

2) Those who have major respiratory problems but little or no digestive problems because their pancreas can produce enzymes (about 15% of CFers). These patients tend to have little to no issues gaining and maintaining weight and are not restricted to a high calorie that most other CFers adhere to.

3) Those who have major digestive problems and minor respiratory problems. From what I know, this is very rare, as usually the respiratory issues are the most prevalent. These patients will often need liver or pancreas transplants.

4) Those who have little respiratory or digestive problems. These are usually the patients who are either mis or undiagnosed for their entire lives.

> Medical care can vary greatly. Unfortunately, some parents/guardians of CFers are either uneducated or unwilling to provide the needed care for their children. You would not believe how many stories I have heard (from children, grandparents, etc.) of parents/guardians who simply do not care about their child's CF....parents/guardians who smoke, provide unclean living conditions, ignore flares, neglect treatments, etc. And, unfortunately, even in the US, many CFers live in areas that do not have a hospital or CF Center near enough to provide the most necessary care/expertise/technology available.

> Personal decisions and attitude can vary greatly. Every CFer makes his/her own decision about his/her personal care as well as the risks he/she is willing to take. As Tricia grew older, she was given more responsibility for her own CF care. Fortunately, she has made the decision to do what her doctors advise and to live a fun but cautious life, but many do not make the same decisions.

> Finances can also have a huge affect on CF care. To provide the care needed for most CFers requires either great personal wealth, great insurance, or great help from third parties.

I'm sure there are several other factors that can affect a CFer's personal health and experiences, but these are the few that I could think of off the top of my head. As always, feel free to research CF further on your own.


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