CDC Raises Awareness of #1 Viral Cause of Disablities--More Common Than Down Syndrome
Suffern, NY. In an effort to prevent the #1 viral cause of mental and physical handicaps, an international community of scientists, academics, practitioners, and families will gather to discuss congenital CMV research findings and how they can be translated into public health action.
The 2008 Congenital CMV Conference will be held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, on November 5-7. http://www.cmvconference2008.com/
According to the CDC:
#Congenital CMV (meaning present at birth) is as common a cause of serious disability as Down syndrome, fetal alcohol syndrome, and neural tube defects
#Every hour, congenital CMV causes one child to become disabled
#Approximately 1 in 150 children is born with congenital CMV infection #Approximately 8,000 children each year suffer permanent disabilities caused by CMV.
Lisa Saunders of Suffern, NY, author and Congenital CMV Foundation Parent Representative, will speak at the Conference. She said, “The moment my daughter Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. I was never warned that I put my pregnancy at risk by working in daycare.” Elizabeth is pictured above. For information about her new book, Anything But a Dog! The perfect pet for a girl with congenital CMV, visit: http://www.authorlisasaunders.com/ See her mission at: http://www.hvbiz.biz/health/health09220801.php
“We expect the 2008 Congenital CMV Conference will raise awareness of birth defects in the broad medical community and the general public. And ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease,” said, Lenore Pereira, Ph.D., Conference Co-Organizer and Founder, Congenital CMV Foundation.
CMV is found in body fluids, including urine, saliva, breast milk, blood, tears, semen, and vaginal fluids. The CDC recommends that pregnant women practice frequent hand-washing, especially after diaper changes, and avoid kissing young children on the mouth or cheek and sharing food, towels or utensils with them. See brochure: www.cdc.gov/cmv/resources/CMV_Brochure_Eng.pdf Hear podcast: www2a.cdc.gov/podcasts/player.asp?f=7926
“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,” state Drs. Cannon and Davis. See article http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379
The 2008 Congenital CMV Conference is sponsored by the CDC and the Congenital CMV Foundation. For more information, contact Lenore Pereira, Ph.D. at firstname.lastname@example.org or visit http://www.cmvconference2008.com/ . 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 email@example.com
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 firstname.lastname@example.org or visit: www.bcm.edu/pedi/infect/cmv . The Registry supports CMV research, disseminates information and provides a parent support group. To donate/contact the Registry, call (832) 824-4387.
There have been recent breakthroughs in helping unborn children if their mothers become infected with CMV. Treatment of CMV infected women with intravenous CMV hyperimmune globulin is showing promising results. See Passive Immunization during Pregnancy for Congenital Cytomegalovirus Infection
Others affected by CMV willing to be contacted by the media:
Jenny McPherson of Augusta, Georgia, is the mother of Abby born 2004. “I had never heard of CMV before I had Abby. I believe all pregnant women should be screened for CMV and be educated about the risks and prevention of CMV during their initial prenatal visit.” Abby has a VP shunt due to hydrocephalus, profound hearing loss, vision impairment, seizure disorder, feeding disorder, and profound cognitive and developmental delays. email@example.com
Jenny Bailey of Houston, Texas, is the mother of Caroline born in 1990. "Caroline was the first baby in Houston to get the ganciclovir treatment, and other than profound hearing loss, she has been fine. The treatment stopped the progress of the disease in her central nervous system in its tracks. In fact, she began reading at age three, was mainstreamed at five, and graduated from high school this year after taking five AP classes senior year and working at Barnes & Noble." Caroline had the cochlear implant surgery at age 14. firstname.lastname@example.org
Chantelle Rowe of Australia is the mother of son Kaiden, born July 4, 2007. "I wish I had known about CMV when I was pregnant. I was one of those women who stuck to all the rules, down to a T. I only ate what I was told to and I stayed away from EVERYTHING I was told to avoid. It just felt like the biggest slap in the face when it happened to me. I was very: 'WHY ME??'" Kaiden is doing very well, but has moderate/severe loss to left ear and profound to right. Chantelle raises awareness through her site: E-mail:
To see photos of other children born with CMV, view the CMV poster available on http://www.cmvinformation.com/
*Lisa Saunders is a writer for the State University of New York at Rockland. Her new book, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus), is the moving and sometimes humorous account of Elizabeth’s life with pets, and includes the latest news on CMV prevention and treatment plus comments from scientists and other parents affected by congenital CMV. Advance copies are available to members of the working press by contacting 800-218-8877 or email@example.com . Contact Lisa Saunders directly for an interview or an autographed copy at firstname.lastname@example.org . To see a photos of Elizabeth Saunders,visit http://www.authorlisasaunders.com/ , to see list of mothers willing to be interviewed, visit Lisa's CMV blog at: http://congenitalcmv.blogspot.com/