Thursday, May 6, 2010

CF Awareness

4
Well, as the title has so cleverly stated....May is Cystic Fibrosis Awareness month.  So, I would like to take the opportunity to make you aware of some things; things about CF and things about a person with CF (aka-me).

CF is a genetic disease...you can’t “catch” it.  Neither is there a cure at this time.  A cure would have to come in the form of changing a specific gene. The docs focus on treating symptoms.

CF affects more than just the lungs, it affects any mucus producing systems.  So, for example, it affects my digestion, sinuses, etc.  I also have CF-related Diabetes.

CF is progressive in that someone continues to get worse.

CF is chronic in that it never goes away. This is a tough aspect-you can never take a vacation.

Fighting CF is a team effort with the whole family and many friends involved.

Many CFers spend between 2-4 hours in daily treatments when they are “healthy” and 6-8 hours in daily treatments when they are fighting viruses.

CF is sometimes represented with 65 Roses.

CF is the most common, deadly genetic disease among caucasians.

The average projected lifespan of CFers is 37.

One of the best places to get information on CF is www.cff.org

I take between 25-30 pills each day.

It is really nice when you don’t notice my cough.  Coughing is actually good for me b/c it moves the mucus from my lungs.  

If you are sick, most likely I will be really careful about how close I come.  I can pick up new bugs easily.  I already have plenty...I don’t want yours too! :- )

Purple is the CF “color.”

Okay, this is not an exhaustive list.  Please feel free to add your .02.

4 Response to CF Awareness

May 6, 2010 at 11:07 PM

CF is not to be dreaded; it makes you who you are.

May 19, 2010 at 8:56 PM

Why 65 Roses?

May 20, 2010 at 12:20 PM

65 roses is often how kids with CF pronounce Cystic Fibrosis. It has now become a symbol for CF.

May 20, 2010 at 8:18 PM

Oh wow. That's funny and poignant at the same time.