www.whyville.net Aug 7, 2011 Weekly Issue

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65 Roses

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Cystic Fibrosis is also known as 65 roses for those who have a hard time pronouncing it. Considering the fact that my little sister has it, and I know so much about it, it's even harder to explain.

By a dictionary definition, it's an inherited chronic disease which affects both the lungs and digestive system. It's not a common disease due to the fact that about 30,000 children and adults in the United States, and only 70,000 worldwide have it. The life expectancy of a child with cystic fibrosis used to be around elementary school age; now, with the aid of new medicines and treatments, it's now into the 30's and above.

A normal day for my sister consists of many tube feedings and treatments. Since the digestive system is affected as well as the lungs, most CF (Cystic Fibrosis) patients have a hard time digesting food. Since my sister has an even rougher time with it, she now has a tube into her stomach from which she gets her daily milk.

I find my sister to be a very brave person, though I've told her that only a few times. She has to go through myraid treatments and therapies everyday and yet, she always has a smile on her face. I was taught by physical therapists specializing in CF how to do my sister's therapy, which I now help with everyday.

I remember during one of her monthly appointments, a crowd of doctors coming to the room and they began suggesting lung transplants. What I recall them specifically saying was that,"Cystic Fibrosis is a genetic disease. There's no cure yet; all we can do is slow down it's progress."

My parents chose not to go along with the lung transplant as they believed there were more disadvantages than advantages. So they started using a new treatment called eFlow as well as getting her a BIPAP machine for when she sleeps. On her next visit, all the doctors were astonished to see that she was improving after all.

I've become so used to spending every summer with her in the hospital, that I was so happy to hear that this time around, it wasn't needed. I know that the doctors, my parents, and the CF foundation are doing what they can, and I think it's safe to say, she's in good hands.

Author's Note: I still felt as though I've left a lot unsaid so I've put up some links where I got my information, and more detailed explanations.



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