Perhaps you can tell your readers and friends about this virus and encourage them to help others become educated.
Below my signature is the press release I had sent out to Connecticut media (I also sent it to the New York Times, but didn't get a response).
PO Box 389
Mystic, CT 06355
Mother Asks Connecticut to Become Second State to Stop #1 Birth Defects Virus
House Bill 5147 includes Cytomegalovirus (CMV) Public Education Program
Mystic, Conn.— Lisa Saunders of Mystic didn’t know how to prevent contracting CMV (cytomegalovirus), which causes more disabilities than Down syndrome, until it was too late for her daughter Elizabeth born with a severely damaged brain.
Saunders, the parent representative of the Congenital CMV Foundation, is now asking legislators to make Connecticut the second state in the Union to prevent the leading viral cause of birth defects by passing HB 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.
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).
- · Congenital CMV causes one child to become disabled every hour.
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.”
Saunders said in her testimony, “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.”
Saunders has been trying to raise CMV awareness for years through her speaking engagements and books, including Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus) and most recently her humorous and historical adventure guide, Mystic Seafarer’s Trail, where she jokes she's trying to get thin and famous like Amelia Earhart (who was secretly married in nearby Noank), so people would listen to her CMV prevention message. For more information about Lisa Saunders and her CMV work, see her short TV interview in this USA 9 News clip or visit Saunders at: www.authorlisasaunders.com.
To learn more about cytomegalovirus (CMV) and the need for education:
Gail J Demmler-Harrison MD, Professor, Pediatrics, Section Infectious Diseases, Baylor College of Medicine, Attending Physician, Infectious Diseases Service, Texas Children's Hospital, CMV Registry, CMV Research and CMV Clinic. Contact: 832-824-4330, firstname.lastname@example.org. The CMV Registry supports CMV research, disseminates information and provides a parent support group.
Dr. Brenda K. Balch, MD, Connecticut's AAP EHDI (Early Hearing Detection & Intervention) Chapter Champion. email@example.com
Ronda Menlove, Utah House of Representatives and Senior Vice Provost, Utah State University, firstname.lastname@example.org
Stephanie Browning McVicar, Au.D., CCC-A, DOCTOR OF AUDIOLOGY (she worked tirelessly to pass the Utah bill), Specialty Services Program Manager, State EHDI Director, State of Utah Department of Health, Children with Special Healthcare Needs, Children's Hearing and Speech Services, (801) 584-8218, email@example.com
Sara Menlove Doutre, President and Education Policy Consultant at Doutre Consulting (her daughter was affected by congenital cytomegalovirus), firstname.lastname@example.org
Alyson Ward, National Center for Hearing Assessment and Management (NCHAM), Alyson.Ward@usu.edu
Lisa Saunders, Congenital CMV Foundation parent representative, CMV blogger at;http://congenitalcmv.blogspot.com. She can be contacted at PO Box 389, Mystic, CT 06355, 845-222-8593, email@example.com,. For more information about the Congenital CMV Foundation, which raises awareness about maternal testing for first infection during pregnancy, newborn testing and the need to develop a vaccine, contact Lenore Pereira, Ph.D., Congenital CMV Foundation founder and Professor, Cell and Tissue Biology Department, University of California San Francisco, at firstname.lastname@example.org, or visit www.congenitalcmv.org.