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Taking great strides for cystic fibrosis
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Posted by tiffybell83 Tue Mar 11, 2008 02:06:02 PDT
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Living each day to the fullest that is my motto.Hi my name is Tiffany Kuehl and at age 2 and a half I was diagnosed with cystic fibrosis.Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 people in the united states and 70,000 world wide.

  A defective gene and its protein cause the body to produce unusually thick sticky mucus that clogs the lungs and leads to life threatening infections, and obstructs the pancreas and stops natural enzymes from helping breakdown and absorb food.

  The only way you can get cystic fibrosis is if your parents are both carriers of the defective cystic fibrosis gene.When both parents are carriers of the gene you have a 25% chance of having cystic fibrosis.The only way to know if your a carrier is to get a genetic test.

  Having cystic fibrosis is challenging. My days are filled with doing treatments, treatments that consist of using a therapy vest that I put on. It inflates and then vibrates helping to clear my lungs of thick mucus.While doing my therapy vest I also use my nebulizer which is a device used to administer medication in forms of liquid medication. I usually have five to six nebulizer medication to do two to three times a day.Through out the day I have to take about 20 pills to help treat different problems caused by this disease. Because of having a low immune system hospital stays are routine. Last year I was in the hospital four times. While in the hospital I am put on weeks of intravenous antibiotics to get me better.

  Everyday I pray for a cure for me and so many others living with cystic fibrosis. I have faith that one day there will be a cure.The cystic fibrosis foundation will be putting on a walk to raise money to find a cure a for cystic fibrosis a walk called "Great Strides."It will be held at "The Park at River Walk'" check in begins at 9 am and the walk will begin at 10 am.

 I myself have my own team Team Tiffy's Tigers and we're going to take great strides to find a cure for cystic fibrosis! So if you can please help me and so many others with this disease and take part in Great Strides 2008! For more information about the walk you can email me Tiffany Kuehl:tkuehl83@yahoo.com

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Comment From: pegconnelly

My neice had cystic fibrosis and she was such a delightful child. Always had a smile on her face. In the 1950's they didn't know much about the disease and her bedroom looked like an ICU room. After many lung surgerys, lots of hospital stays, she passes away at 9 years old. I certainly admire you since I know how difficult a disease it can be. Thank goodness medicine progresses every year. Best Wishes. Comment From: dweaver3

How cute! I didn’t even know there was a miniature horse farm in the area. My son and I will definitely have to visit!