Eleven years ago I received a phone call that my sister-in-law had given birth to my very first niece. I raced from NIU in DeKalb to the Western Suburbs in joyous anticipation of meeting the new addition to our family. I had failed to ask where Suzanne (my S-I-L) had delivered and in a day where cell phones were not attached to our ears, I took a chance and went to the nearest hospital.
Three hospitals later, I finally gazed upon the red-headed wonder that was baby Katie.
Just days after she was born, Katie was diagnosed with Cystic Fibrosis, an inherited, chronic disease that attacks the respiratory and digestive systems of the body. At the cellular level, a mutated gene produces a thick, sticky mucus that eventually clogs the lungs and makes digestion difficult.
In the U.S., all newborn babies are screened before they leave the hospital to identify serious or life-threatening conditions. The importance of this screen is to diagnose and start a child with the proper treatment before they become ill. Some symptoms do not surface immediately and the newborn screen allows parents and caregivers to create a plan of action for healthy living.
Approximately 30,000 children and adults have CF in the United States.
More than 10 million Americans are symptomless carriers of the defective CF gene.
The disease occurs in one of every 3,500 live births of all Americans and about 1,000
new cases of cystic fibrosis are diagnosed each year.
Because the severity of the disease varies from person to person, typically, you would never know someone even has CF. Treatment for the disease includes taking pancreatic enzyme supplement capsules with every meal, airway clearance techniques, multi vitamins and liquid medicine inhaled through a nebulizer.
Airway clearance techniques (ACTs) are treatments that help people with cystic fibrosis stay healthy and breathe easier. ACTs loosen thick, sticky lung mucus so it can be cleared by coughing or huffing. Clearing the airways reduces lung infections and improves lung function.
Designed to be a support system, a CF care team, backed by the Cystic Fibrosis Foundation is also meant to help extend the median predicated age of people with CF to the mid-30's. (Info found on cff.org)
The devastating part about CF is that there is no cure.
The great thing is that my niece is one tough cookie as are many of the people I have met in the Cystic Fibrosis community. They refuse to take "no cure" for an answer and many have taken to the streets to rally support for the Cystic Fibrosis Foundation. A natural public speaker, 11-year-old Katie speaks each year to help kick off our local Great Strides Fox Valley walk!
My family supports the Cystic Fibrosis Foundation in their constant endeavor to find a cure through our participation in the Foundation's yearly Great Strides National Walk Event. In 2010, the Fox Valley Great Strides walk (previously the Geneva Great Strides walk) raised $46,000 and rallied 250 supporters. The goal for all 650 walk sites in 2011 is $40 million, with the Fox Valley walk on pace to raise $50,000.
This Sunday, May 22, I will walk to help the Cystic Fibrosis Foundation raise money to support the research to find a cure. My family will join countless other teams who support a family member or friend who has been diagnosed with CF.
If you are around St. Charles on the 22nd and would like to walk, great!
To learn more about Cystic Fibrosis and the Cystic Fibrosis Foundation visit cff.org.
*Cystic Fibrosis Foundation, cff.org 4/12/2010. Airway Clearance Techniques and stats Retrieved 3/15/11
Filed under: Health
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