Wednesday, May 1, 2013

May is National CF Awareness Month: Fun Fact #1

I'm gonna take a leap here and assume that the majority of my readers know the basic definition of Cystic Fibrosis. If not in an effort to not re-create the wheel check out the CF Foundations definition here.

I want this awareness month to teach you something or to dispel a previous assumption or belief about CF. I don't wanna just regurgitated what's already out there. Therefore, I do need your help. Please ask a question in the comments below and I will answer it. Or if you prefer to email your questions you may send it to illnessinspiredwords @ gmail dot com.

Fun Fact #1:

CF is not a lung disease!

Yep, it's true. CF is a complicated disease wherein the cells can't regulate or transport (or both) a proper balance of water and salt. The respiratory tract or lungs is only one of many organs or grouping of organs affected by the improper regulation.

CF has directly damaged my lungs, sinuses, liver, pancrease, digestive tract, and joints/bones. Each CF patient is affected differently. While some may experience severe issues with their pancrease others might not have any issue with their pancrease at all. However, nearly all CF patients do experience respiratory issues; some mildly and some extreme. With all patients, as the disease progresses so does the damage to the organs, in fact many patients at some point face needing an organ transplant.

Much of today's medical research for CF involves correcting the cells ability to transport/regulate the water and salt. While many drugs in the past have "treated" the side affects, the new drugs are being developed with the hopes of "treating" the cause. The drugs that are/have "treated" the side affects, have given us patients a much better quality of life and many of us are able to live longer. So, the idea that the drugs on the horizon can "treat" the cause is bringing so much hope to our community.

Many of you have supported the CF Foundation with monetary donations thru events like the Great Strides. You monies have been instrumental in developing these new drugs. They are life saving. They are bringing about better quality of life. They are allowing us to seek our dreams, hopes and wants. Thank You!

So, while many in the CF community refer to CF as a lung disease it truly is not. The lungs are a very large organ that does get irreversably damaged from the cells inability to transport/regulate water and salt. I do think CF got coined a "lung disease" because of just how much damage and treatment goes into treating the lungs or attempting to delay the damage in hopes of prolonging life.

Please send in your questions. No question is silly.

~Doodlin'

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