Wednesday, April 2, 2014
Harmony & Dissonance
I was a month old when I was diagnosed with CF. For much of my life, CF and I lived in complete harmony, without any epic moments of dissonance. CF and I grew up together, very seldom getting in each other's way. For the most part I never thought about CF and what it really meant to my life. Sure, my childhood might look different than most kids,' but it was still wonderfully filled with school, swimming lessons, birthday parties, basketball camps, little league, and slumber parties. Looking back at my childhood I realize how many wonderful people I was surrounded by and the memories I will forever hold dear. I wouldn't wish for any other childhood. It has made my life what it is today: a composition of harmony and dissonance. A beautiful song.
When I was born newborn screening for CF was not mandatory. Because early detection is so vital to the success of treating CF, newborn screening is now mandatory in all 5O states.
How is CF diagnosed?
"Sweat Test — If a person shows symptoms of CF or if a baby has a positive newborn screen for CF, a doctor may order a sweat test. This simple, painless test is the best way to diagnose CF. It measures the concentration of salt in a person’s sweat. A high salt level indicates CF.
Newborn Screening — Newborns screened for cystic fibrosis can benefit from early diagnosis and treatment, which can:
• Improve growth;
• Help keep lungs healthy;
• Reduce hospital stays; and
• Add years to life.
Genetic Carrier Testing — More than 10 million Americans are symptomless carriers of the defective CF gene. This blood test can help detect carriers, who could pass CF onto their children. To have cystic fibrosis, a child must inherit one copy of the defective CF gene from each parent.
Each time two carriers of the CF gene have a child, the chances are:
• 25% (1 in 4) the child will have CF;
• 50% (1 in 2) the child will carry the CF gene but not have CF; and
• 25% (1 in 4) the child will not carry the gene and not have CF"
If my life were being written as a musical composition, the sweetest melodies and harmonies would come from those relationships and memories that live within me. Each of you is a beautiful note in the song of my life that is continuing to be written.
What beautiful harmony is your life making?
Thank you for the amazing response to this blog. I am so incredibly humbled by the love and support you have each so graciously out poured. Love to you all!