I have just returned from speaking at an international conference held at the Centers for Disease Control and Prevention (CDC) in Atlanta. I am a mother who was not warned how to protect my unborn child from the #1 birth defects virus, congenital CMV (cytomegalovirus). OB/GYNs still do not warn women about it and I'm trying to change that in the United States. Below is a press release I have put together with additional contact information if you feel you can make this into a story (or at least a mention)!IMMEDIATE RELEASE:
Lisa SaundersSuffern, NY
saundersbooks@aol.com
CDC Raises Awareness of #1 Birth Defects Virus--MORE COMMON THAN DOWN SYNDROME
Pregnant Women Unaware Saliva of Young Children Potentially Harmful to Unborn
Suffern, NY. The largest international gathering ever of clinicians and researchers focused on the prevention and control of congenital cytomegalovirus (CMV)—the #1 viral cause of mental and physical handicaps—at the Centers for Disease Control and Prevention.
The 2008 Congenital CMV Conference was held in Atlanta, GA, on November 5-7. More than 250 attendees came from 20 countries and included virologists, epidemiologists, pediatricians, immunologists, perinatalogists, maternal-fetal medicine specialists, health education specialists, advocacy experts, OB/GYNs, parents and grandparents. The countries represented included Israel, Italy, France, Portugal, U.K., Belgium, The Netherlands, Sweden, Denmark, New Zealand, Australia, Ukraine, Canada, China, India, Japan and others.
Lisa Saunders of Suffern, NY, author and Congenital CMV Foundation Parent Representative, spoke at the Conference. She said that the moment her daughter Elizabeth was born, she was devastated because her head was so small and deformed. She was never warned that she had put her pregnancy at risk by working in daycare.
Lisa states, "Seeing all of those scientists and health practitioners who have spent much of there career working on CMV, and even those who are just beginning, erased all those years of feeling alone with what this little publicized disease did to my daughter and to my family. I was touched when one scientist told me that working with molecules can be lonely work, but hearing me speak and reading my story gave her inspiration." (Saunders' humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," raises funds for CMV research and parent support if purchased through the Congenital CMV Disease Registry at www.unlimitedpublishing.com/cmv )
According to the CDC (www.cdc.gov/cmv)
#Every hour, congenital CMV causes one child to become disabled
#Approximately 8,000 children each year suffer permanent disabilities caused by CMV.
The CDC recommends that pregnant women practice frequent hand-washing, especially after diaper changes, and avoid kissing young children on the mouth and sharing food, towels or utensils with them. (Congenital CMV precautions are also listed in their Pregnancy Information site at: www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm).
CONTACTS/MORE INFO:For more information about congenital CMV and how you can protect your pregnancy, contact Gail J Demmler MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387. The book, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” may be purchased through them at www.unlimitedpublishing.com/cmv Copies are available to members of the working press by contacting 800-218-8877 or news@unlimitedpublishing.com
The 2008 Congenital CMV Conference was sponsored by the CDC and the Congenital CMV Foundation. For more information, contact Lenore Pereira, Ph.D. at lenore.pereira@ucsf.edu. The Foundation Web site, www.congenitalcmv.org/ includes Members of the Scientific Advisory Committee with their contact information. You may contact the Conference co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at mcannon@cdc.gov
“The virtual absence of a prevention message has been due, in part, to the low profile of congenital CMV. Infection is usually asymptomatic in both mother and infant, and when symptoms do occur, they are non-specific, so most CMV infections go undiagnosed,” stated Drs. Cannon (of the CDC) and Davis in their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” available on: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 Hear the brief CDC/CMV podcast at:: http://www2a.cdc.gov/podcasts/player.asp?f=7926
