Friday, April 25, 2014

Need health topic for your TV/radio show or print media?

I am the parent representative of the Congenital CMV Foundation and am trying to prevent other moms from passing along the #1 birth defects virus, congenital cytomegalovirus (CMV), which causes more birth defects than Down syndrome. For more information about my CMV prevention work, see my short TV interview at Fox CT news.

Utah finally passed a law requiring education, especially in daycare centers. The state where I now live, Connecticut, is currently considering passing a similar bill after I brought Utah's bill to their attention (see CT's House Bill 5147).

Congenital CMV can be prevented if women of childbearing age learn the precautions to take, which includes refraining from kissing their toddlers around the mouth or sharing food with them. A study in done in France concluded that a prevention message does indeed reduce the chances of a pregnant women passing this debilitating virus onto her unborn.
According to a study posted on the Centers for Disease Control and Prevention (CDC) website, “fewer than half (44%) of OB/GYNs surveyed reported counseling their patients about preventing CMV infection” despite the following statistics from the CDC:
  • ·        About 1 in 150 children is born with congenital CMV infection (approximately 30,000 in the U.S. each year).
According to an article co-authored by Dr. Cannon of the CDC, “The direct annual economic costs of caring for these children are estimated at $1-2 billion…by missing prevention opportunities, we in the medical and public health communities are washing our hands of the congenital CMV disease epidemic.”
My OB/GYNs didn’t tell me how to prevent congenital CMV until after my daughter was born. Then I received literature stating women who work in daycare, or have a young child in daycare, are at a higher risk for catching it as preschoolers are the majority of carriers. While I was pregnant with Elizabeth, I had a toddler plus ran a licensed daycare center. Nowhere in the licensing literature was there a CMV prevention message. In milder cases, children may lose hearing or struggle with learning. But Elizabeth's case was not a mild one. She was born with a very small damaged brain with calcium deposits throughout. She was quadriplegic from cerebral palsy, was unable to speak or even hold  up her head. She was cortically blind and suffered for progressive hearing loss and epilepsy. She died at the age of 16 during a seizure after enduring several surgeries including spinal fusion.  
I have been trying to raise CMV awareness through my speaking engagements and books, including Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus) and most recently my travel memoir,  Mystic Seafarer’s Trail, where I embarked on a long, winter voyage with blind sailor hoping the adventure would make me thin and famous like Amelia Earhart (who was secretly married near Mystic), so people would listen to my CMV prevention message.
 To learn more about me, visit: or see this  USA 9 News clip

Thank you!
Lisa Saunders
P.O Box 389
Mystic, CT 06355

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