June 7, 2010
Lisa Saunders
Parent Representative:
Congenital CMV Foundation
and Stop CMV
Contact: saundersbooks@aol.com
Suffern, NY--June has been designated National Congenital CMV (cytomegalovirus) Awareness Month by Stop CMV--The CMV Action Network in conjunction with the U.S. Dept. of Health and Human Services in an effort to teach women of child-bearing age how to prevent the leading viral cause of birth defects, which causes more disabilities than Down syndrome. Month-long nationwide events will culminate with Congenital CMV Awareness Day at the Centers for Disease and Prevention (CDC) on June 29.
According to the CDC (www.cdc.gov/cmv). :
• Every hour, congenital CMV (cytomegalovirus) causes one child to become disabled
• Each year, about 30,000 children are born with congenital CMV infection
• About 1 in 750 children is born with or develops permanent disabilities due to CMV
• About 8,000 children each year suffer permanent disabilities caused by CMV
Examples of permanent symptoms or disabilities caused by congenital CMV:
- Hearing loss
- Vision loss
- Mental disability
- Small head
- Lack of coordination
- Seizures
- Death
The CDC in Atlanta, Georgia, is holding a Congenital CMV Awareness Day on June 29. Presenters include Janelle Greenlee, President/Founder of Stop CMV--The CMV Action Network and mother of twin girls born with congenital CMV; Gail J Demmler-Harrison MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program; Dr. Bob Pass, Pediatrician & Research, University of Alabama at Birmingham; Shanna Boot, mother of a son born with congenital CMV; and Michael J. Cannon, Ph.D., Research Epidemiologist, CDC. For more information about the event, which is sponsored by the Prevention Research Branch of the Division of Birth Defects and Developmental Disabilities at the CDC, e-mail: mcannon@cdc.gov
Lisa Saunders of Suffern, N.Y., didn’t know about CMV prevention until her daughter, Elizabeth, was born severely disabled by the virus in 1989. Elizabeth had cerebral palsy, epilepsy, and was mentally, visually and hearing impaired. Saunders, author of memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” which includes emerging treatment information and raises funds for CMV research (if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv), spoke at the international 2008 Congenital CMV Conference at the CDC. She said, “Mothers at the conference were coming up to me after my speech with their children in wheelchairs or wearing hearing aids, and asked, ‘Why didn’t my OB/GYN warn me how to protect my baby from CMV?’”
In the article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” authors Drs. Cannon and Davis state: “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.”
More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 admitted they don't routinely caution their patients about CMV.
According to a 2006 survey reported in the article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," of the 643 women surveyed about their CMV awareness, only 22% had heard of it and most of those could not correctly identify modes of CMV transmission or prevention.
To reduce chances of contracting congenital CMV, women of childbearing age should:
· Refrain from kissing children around the mouth--give them a big hug and a kiss on the top of the head instead.
· Refrain from sharing food and utensils with others, especially children.
· Wash hands diligently with soap and water after wiping runny noses, changing diapers, picking up toys, etc. If soap and water are not available, use alcohol-based hand gel.
Lenore Pereira, PhD, Founder of the Congenital CMV Foundation, University of California, San Francisco, said, “Ultimately, we hope that awareness will lead to universal testing of pregnant women and their babies, improved therapies, and vaccines for prevention of disease.”
For more information about congenital CMV and how you can protect your pregnancy, contact Dr. Demmler-Harrison at gjdemmle@texaschildrenshospital.orgor visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387. A good booklet, which includes comments on prenatal blood tests, is found at: http://www.bcm.edu/web/pediatrics/documents/CMV_Brochure_eng.pdf
How you can help stop congenital CMV:
Visit Stop CMV at http://www.stopcmv.org/ print the comprehensive one-page flyer at www.stopcmv.org/flyers.php Ask your doctors and friends to post the flyers and/or hand out. Since 2003, Stop CMV has been working to foster congenital CMV awareness via Internet and public awareness campaigns. They post several simple ways you can help raise awareness.
For more information about the press release, contact Lisa Saunders, Representative of Stop CMV and the Congenital CMV Foundation, at saundersbooks@aol.com or see her work to prevent congenital CMV at: http://congenitalcmv.blogspot.com/ Saunders will be speaking at the 2010 Congenital CMV Conference held in Paris, France, in September: http://www.congenitalcmv2010.org/
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Additional Information:
TV coverage, articles and studies:
Lisa Saunders interviewed on USA 9 News about her daughter's life with CMV: http://www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28
Article about Lisa Saunders' work to raise CMV awareness,which includes advice from internationally known CMV experts, in Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
Soap and water prevents birth defects: http://www.parentguidenews.com/Catalog/SpecialNeeds/SoapandWater/
To see slides of Elizabeth Saunders, born with congenital CMV, visit Lisa Saunders' PowerPoint presentation at http://webcast.streamlogics.com.edgesuite.net/customer/conf-plus/siemens/2010Apr20/auditorium/resources/Lisa%20Saunders%20Presentation.pdf or register in order to hear her present the PowerPoint at: http://www.meetme.net/torch
“Washing our hands of the congenital cytomegalovirus disease epidemic”: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379
"Knowledge and Practices of Obstetricians and Gynecologists Regarding Cytomegalovirus Infection During Pregnancy --- United States, 2007": www.cdc.gov/mmwr/preview/mmwrhtml/mm5703a2.htm2006
PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Fit Pregnancy Magazine article quoting an OB/GYN on why CMV prevention isn't discussed(June/July 2008 issue): Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development
CMV CDC site: http://www.cdc.gov/cmv/Charts showing prevalence of congenital CMV and women’s knowledge of it: http://www.cdc.gov/Features/dsCytomegalovirus/This CDC link includes congenital CMV podcasts http://www.cdc.gov/Features/Cytomegalovirus/
Pregnant and have an active CMV infection?
Contact an expert at the Texas Children’s Hospital Fetal Center for advice. For contact information, visit http://www.texaschildrens.org/CareCenters/fetalsurgery/default.aspx
Also contact the National Congenital CMV Disease Registry at cmv@bcm.edu or visit: www.bcm.edu/pedi/infect/cmv
Treatment:
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. More information can be found in the article, “Passive Immunization during Pregnancy for Congenital Cytomegalovirus Infection,” by Giovanni Nigro, M.D., Stuart P. Adler, M.D., Renato La Torre, M.D., Al M. Best, Ph.D., (originally published in The New England Journal of Medicine on September 29, 2005).Some children born with congenital CMV are being treated with ganciclovir. The CDC states: "There is some evidence that ganciclovir, an antiviral drug, may prevent hearing loss in infants born with congenital CMV. However, this drug has serious side effects and was only tested in children with severe congenital CMV symptoms. If your child has symptoms of congenital CMV, you should consult with your doctor to decide whether to try treatment."
Scientific papers on CMV stats and emerging treatments, see: http://www.congenitalcmv.org/research.htm The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, can be reached at lenore.pereira@ucsf.edu, or visit www.congenitalcmv.org/ which includes Members of the Scientific Advisory Committee with their contact information. Dr. Pereira has studied immune responses to CMV infection and molecular biology of viral glycoproteins for over 25 years. To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm
Your Child Disabled by CMV?
Contact other CMV parents for advice or simply “chat” at: http://listserv.syr.edu/scripts/wa.exe?A0=cmv
Join the STOP CMV Action Network and read each other’s stories at: http://www.stopcmv.org/
Contact Dr. Demmler-Harrison at gjdemmle@texaschildrenshospital.orgor visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Registry: (832) 824-4387.