Soon a magazine will be publishing the following story with sidebar. I was asked to get it down to 825 words, which I've done in the following:
Soap and Water Prevent Birth Defects
by
Lisa Saunders
Few women of child-bearing age realize that plain old soap and water can prevent the #1 viral cause of birth defects, congenital cytomegalovirus (CMV).
Although congenital CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists admitted they don't routinely caution their patients how to avoid the virus.
I'm a mother who didn't know about CMV prevention until it was too late for my daughter, Elizabeth, who was born severely disabled by congenital CMV in 1989. The moment I saw her, I felt a stab of fear--her head was so small, so deformed. The neonatologist said, "If she lives, she will never roll over, sit up, or feed herself." He was right.
How and why did I catch this virus that I had barely heard of? The CMV literature stated that the virus is spread through bodily fluids such as saliva and urine. Women who care for young children are at a higher risk for catching it because preschoolers are the majority of carriers. (Nurses, however, do not seem to be in the risk category because they practice consistent hand-washing and aren’t kissing their patients around the mouth or sharing utensils with them).
While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.
It took about a year, but I eventually stopped praying that a nuclear bomb would drop on my house so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again--but it took a lot of help from family, friends, the Book of Psalms, and a couple of prescription sedatives!
Sixteen years after Elizabeth’s birth, I awoke on her birthday feeling so proud of her. She had fought hard to stay with us, surviving several bouts of pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.
Two months after her 16th birthday, Elizabeth died suddenly during a seizure. Holding her body in his arms and looking into her lifeless eyes, my husband, Jim, cried, "No one is ever going to look at me again the way Elizabeth did." Now my girl would be forever "sweet sixteen."
In an effort to educate those who have never heard of congenital CMV, I wrote a light-hearted memoir about Elizabeth’s life with her lazy, old devoted canine, called, "Anything But a Dog! The perfect pet for a girl with congenital CMV." It includes interviews with the country's leading CMV experts and raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry.
To see photos of Elizabeth growing up or to meet other families affected by congenital CMV, please visit my Web site at http://www.authorlisasaunders.com/
###
Lisa Saunders is a full-time writer for the State University of New York at Rockland Community College and is a member of its Speakers Bureau. She is a STOP CMV and Congenital CVM Foundation representative and author of "Anything But a Dog! The perfect pet for a girl with congenital CMV"; "Ride a Horse, Not an Elevator" and "Ever True: A Union Private and His Wife." Lisa and her husband, Jim, reside in Suffern, New York, with their beagle/basset hound. Visit Lisa at http://www.authorlisasaunders.com/
SIDEBAR:
According to the Centers for Disease Control and Prevention (CDC):
· Every hour, congenital CMV 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
Reduce Chances of Contracting CMV:
· Refrain from kissing children around the mouth
· Refrain from sharing food and utensils with others, especially children.
· Wash your hands diligently with soap and water after wiping runny noses, changing diapers, etc. If soap and water are not available, use alcohol-based hand gel.
Wednesday, November 25, 2009
Wednesday, October 7, 2009
Women Aren't Warned About #1 Birth Defects Virus
Few women of child-bearing age realize that plain old soap and water can prevent the #1 viral cause of birth defects, congenital cytomegalovirus (CMV). And, many are never warned that kissing their toddlers around the mouth can lead to permanent disabilities for their developing fetus. (My daughter Elizabeth, pictured here, was born disabled by CMV.)
Although congenital CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed admitted they don't routinely caution their patients how to avoid the virus. Women who care for young children are at a greater risk for catching CMV because preschool children are the majority of the carriers. Although it is usually harmless to healthy individuals, it can be devastating to a developing fetus.
According to the Centers for Disease Control and Prevention (CDC):
Every hour, congenital CMV 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
In order to reduce the spread of CMV infection, women of childbearing age should refrain from kissing their children around the mouth, sharing food and utensils with them, and they must wash hands their hands diligently with soap and water after wiping runny noses, changing diapers, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.
I’m a mother who didn’t know about CMV prevention until it was too late for my daughter, Elizabeth, who was born with congenital CMV in 1989. The moment Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right.
By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Jim cried, “No one is ever going to look at me again the way Elizabeth did.” No other parent should have to feel that way—especially when there are precautions one can take to avoid this kind of suffering.
After speaking at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, G.A., to a community scientists and families about Elizabeth’s life with CMV, mothers approached me holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
One OB/GYN was quoted in FitPregnancy magazine (June/July '08) as saying, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.” Others simply don’t realize the prevalence of congenital CMV.
In their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” 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.”
In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research and parent support if purchased through the National Congenital CMV Disease Registry. About.com reviewed Anything But a Dog! saying, "Sheds light on a disorder that is preventable and not talked about enough…If you're an animal lover, you'll love the critter tales as much as the special-needs storyline…really lifted my spirits."
Please tell everyone about CMV and don’t forget to wash your hands!
Lisa Saunders, Parent Representative, Congenital CMV Foundation, and STOP CMV area rep.
Tuesday, September 22, 2009
CMV Parents: Send Letter to the Media
Dear CMV Parents: If you like any of the following letters, just tweak it to focus on your child and your hometown and send it to any radio/TV stations/newspapers you are willing to be interviewed for (consider attaching a photo because that makes it more human and the print media need photos). Also, below my signature I included several links to CMV sources such as STOP CMV and the articles I quote.
Dear [name of producer/editor]
[Mention how you found out about them.]
Congenital CMV (cytomegalovirus) causes more birth defects than Down syndrome, yet very few women have actually heard how to prevent it. Would you be interested in interviewing congenital CMV experts and parents with CMV disabled children to educate the public how careful hand-washing and refraining from sharing utensils with toddlers can prevent this #1 viral cause of birth defects?
Dear [name of producer/editor]
[Mention how you found out about them.]
Congenital CMV (cytomegalovirus) causes more birth defects than Down syndrome, yet very few women have actually heard how to prevent it. Would you be interested in interviewing congenital CMV experts and parents with CMV disabled children to educate the public how careful hand-washing and refraining from sharing utensils with toddlers can prevent this #1 viral cause of birth defects?
I live in Mystic,CT, am the parent representative of the Congenital CMV Foundation and a STOP CMV area representative. I didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband and me. Two months later, she died suddenly during a seizure.
I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life with CMV. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
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 despite these figures from the CDC:
• Every hour, congenital CMV 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 (See: www.cdc.gov/cmv).
According 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.CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses, who it can harm. Pregnant women can help prevent CMV by hand-washing and by refraining from kissing young children around the mouth.
The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.
My short TV news interview: http://video.aol.com/video-detail/coping-with-cmv/3443071507
To read about my CMV awareness work along with advice from internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog ! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv
I am a full-time writer for the State University of New York at Rockland Community College and a member of its Speakers Bureau.
Please let me know if you would like the contact information for the country's leading CMV experts as well as the parents who have said they are willing to come on the show with their children (whose birth defects range from mild deafness to severe disabilities like my daughter).
Sincerely,
Lisa Saunders
[Include your full address and all phone numbers]
saundersbooks@aol.com
http://www.authorlisasaunders.com/
The contact information of other CMV Parents willing to come on the show with their children is also available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003 .My CMV blog: http://congenitalcmv.blogspot.com/
To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm
CMV Information Sources:
CMV CDC site: http://www.cdc.gov/cmv/
“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.htm
2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article quoting OB/GYN why CMV p revention isn't discussed in Fit Pregnancy Magazine, 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
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 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.govThe other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biolog y 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.
I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life with CMV. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
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 despite these figures from the CDC:
• Every hour, congenital CMV 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 (See: www.cdc.gov/cmv).
According 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.CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses, who it can harm. Pregnant women can help prevent CMV by hand-washing and by refraining from kissing young children around the mouth.
The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.
My short TV news interview: http://video.aol.com/video-detail/coping-with-cmv/3443071507
To read about my CMV awareness work along with advice from internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog ! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv
I am a full-time writer for the State University of New York at Rockland Community College and a member of its Speakers Bureau.
Please let me know if you would like the contact information for the country's leading CMV experts as well as the parents who have said they are willing to come on the show with their children (whose birth defects range from mild deafness to severe disabilities like my daughter).
Sincerely,
Lisa Saunders
[Include your full address and all phone numbers]
saundersbooks@aol.com
http://www.authorlisasaunders.com/
The contact information of other CMV Parents willing to come on the show with their children is also available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003 .My CMV blog: http://congenitalcmv.blogspot.com/
To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm
CMV Information Sources:
CMV CDC site: http://www.cdc.gov/cmv/
“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.htm
2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article quoting OB/GYN why CMV p revention isn't discussed in Fit Pregnancy Magazine, 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
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 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.govThe other 2008 Congenital CMV Conference co-sponsor, CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biolog y 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.
Tuesday, May 12, 2009
Toddler Saliva May Contain Birth Defects Virus
Few women of child-bearing age realize that plain old soap and water can prevent the #1 viral cause of birth defects, congenital cytomegalovirus (CMV). And, women also need to know that they shouldn't kiss their toddlers around the mouth.
Although CMV causes more birth defects than Down syndrome, more than half of OB/GYNs surveyed admitted they don't routinely caution their patients how to avoid the virus. Women who care for young children are at a greater risk for catching CMV because preschool children are the majority of the carriers. Although it is usually harmless to healthy individuals, it can be devastating to a developing fetus.
According to the Centers for Disease Control and Prevention (CDC):
Every hour, congenital CMV 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 (See http://www.cdc.gov/cmv/)
In order to reduce the spread of CMV infection, women of childbearing age should refrain from kissing their children around the mouth, sharing food and utensils with them, and they must wash hands their hands diligently with soap and water after wiping runny noses, changing diapers, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.
I’m a mother who didn’t know about CMV prevention until it was too late for my daughter, Elizabeth, who was born with congenital CMV in 1989. The moment Elizabeth was born, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right.
By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Jim cried, “No one is ever going to look at me again the way Elizabeth did.” No other parent should have to feel that way—especially when there are precautions one can take to avoid this kind of suffering.
After speaking at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about Elizabeth’s life with CMV, mothers approached me holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
One OB/GYN was quoted in FitPregnancy magazine (June/July '08) as saying, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.” Others simply don’t realize the prevalence of congenital CMV.
In their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” 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.”
“It is important to remember that CMV is most commonly spread in the family setting. Reason being is that in the home environment, families are more casual about hygiene and for instance may share eating and drinking utensils, food and beverages, or be hurried during diaper change and forget to immediately wash hands afterwards,” states Carol M. Griesser, R. N., Research Nurse and Clinical Coordinator, Congenital CMV Longitudinal Studies, National Congenital CMV Disease Registry, Baylor College of Medicine, Texas Children's Hospital. Griesser suggests ways to keep the home and daycare environment safer: “Unlike some other viruses, cytomegalovirus is a very fragile virus that usually does not live on a surface beyond about 30 minutes time. Active CMV can be destroyed or rendered inactive by washing any contaminated objects with a 10% bleach solution (followed by rinsing the object). Objects that can't withstand the bleach solution disinfectant method, such as stuffed animals and pillows, should be put outside in direct sunlight for about a couple of hours.”
In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research and parent support if purchased through the Registry at www.unlimitedpublishing.com/cmv About.com reviewed Anything But a Dog! saying, "Sheds light on a disorder that is preventable and not talked about enough…If you're an animal lover, you'll love the critter tales as much as the special-needs storyline…really lifted my spirits." To read an excerpt, visit: http://anythingbutadog.blogspot.com/
Please tell everyone about CMV and don’t forget to wash your hands! If you would like to meet moms whose children were born with CMV infection or pick up handouts about CMV prevention, there will be a CMV Awareness table set up at Adventureland Amusement Park on Long Island this Saturday, May 16. If you want to know more about that, visit Lynn Pickus's blog about it at: http://cmvadventureland.blogspot.com/
Sincerely,
Lisa Saunders
Saturday, April 25, 2009
Prevent #1 birth defects virus--LETTER TO POLITICIANS
Letter to Politicians:
I’m asking you to help, through some sort of resolution, proclamation, or legislation, to promote an educational campaign aimed at teaching women of childbearing age how to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), which causes more disabilities than Down syndrome.
An educational campaign can mean something as simple as posting information about CMV prevention in the offices of OB/GYNs. You will find support for your efforts from the National Congenital CMV Disease Registry, the Congenital CMV Foundation and STOP CMV area parent reps who all work together to raise awareness and research funds.
I’m a mother who didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Holding Elizabeth’s body in his arms, Jim cried, “No one is ever going to look at me again the way Elizabeth did.” This kind of anguish must stop--especially since education might have avoided it.
I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about Elizabeth’s life with CMV. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
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 despite these CDC figures:
• Every hour, congenital CMV 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 (See: www.cdc.gov/cmv).
According 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.
CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses [who it can harm]. Pregnant mothers who have young children in day care or who work in day care centers may help prevent getting infected with CMV by practicing good hygiene and by avoiding direct contact with saliva through behaviors such as kissing young children on the lips. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.”
The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually. Surely it would save the government money overall if some time and resources were used to educate the public how to prevent contracting CMV. Other parents in the STOP CMV action network, and doctors who are the country’s leading CMV experts, advocate for legislation aimed at funds for the research and screening of congenital CMV in pregnant mothers and their newborn children.
In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” Read an excerpt at http://anythingbutadog.blogspot.com/ It raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv
To read about my CMV awareness work along with internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
Let me know what I can do to help you raise a CMV prevention message.
Sincerely,
Lisa Saunders
I am a full-time writer for the State University of New York at Rockland, a member of its Speakers Bureau and a STOP CMV and Congenital CVM Foundation representative as well as a member of the National CMV Disease Registry. To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm
My short TV news interview: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28
Other CMV Parents willing to be contacted available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.
CMV CDC site: http://www.cdc.gov/cmv/
“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.htm
2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, 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
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 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov
The other 2008 Congenital CMV Conference co-sponsor, 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.
Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/
“If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm
I’m asking you to help, through some sort of resolution, proclamation, or legislation, to promote an educational campaign aimed at teaching women of childbearing age how to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), which causes more disabilities than Down syndrome.
An educational campaign can mean something as simple as posting information about CMV prevention in the offices of OB/GYNs. You will find support for your efforts from the National Congenital CMV Disease Registry, the Congenital CMV Foundation and STOP CMV area parent reps who all work together to raise awareness and research funds.
I’m a mother who didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband, Jim, and me. Two months later, she died suddenly during a seizure. Holding Elizabeth’s body in his arms, Jim cried, “No one is ever going to look at me again the way Elizabeth did.” This kind of anguish must stop--especially since education might have avoided it.
I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about Elizabeth’s life with CMV. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
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 despite these CDC figures:
• Every hour, congenital CMV 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 (See: www.cdc.gov/cmv).
According 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.
CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses [who it can harm]. Pregnant mothers who have young children in day care or who work in day care centers may help prevent getting infected with CMV by practicing good hygiene and by avoiding direct contact with saliva through behaviors such as kissing young children on the lips. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.”
The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually. Surely it would save the government money overall if some time and resources were used to educate the public how to prevent contracting CMV. Other parents in the STOP CMV action network, and doctors who are the country’s leading CMV experts, advocate for legislation aimed at funds for the research and screening of congenital CMV in pregnant mothers and their newborn children.
In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” Read an excerpt at http://anythingbutadog.blogspot.com/ It raises funds for CMV research if purchased through the National CMV Disease Registry at www.unlimitedpublishing.com/cmv
To read about my CMV awareness work along with internationally known CMV experts, visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
Let me know what I can do to help you raise a CMV prevention message.
Sincerely,
Lisa Saunders
I am a full-time writer for the State University of New York at Rockland, a member of its Speakers Bureau and a STOP CMV and Congenital CVM Foundation representative as well as a member of the National CMV Disease Registry. To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm
My short TV news interview: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28
Other CMV Parents willing to be contacted available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.
My blog at: http://congenitalcmv.blogspot.com/
Sources of CMV and CMV Prevention Facts:
CMV CDC site: http://www.cdc.gov/cmv/
“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.htm
2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, 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
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 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov
The other 2008 Congenital CMV Conference co-sponsor, 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.
Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/
“If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm
Saturday, April 11, 2009
My Mom Gets Up at 5 a.m. to Stop #1 Birth Defects Virus
Elizabeth and I on last family vacation
Her blog, http://congenitalcmv.blogspot.com/, contains links to the CDC's Web site and other organizations for more facts about CMV.
Several times a week, my mom, Lisa Saunders of Suffern, N.Y., wakes up around 5 a.m., and logs into her AOL account, hoping to make a difference in another mother's life that morning. She isn't online shopping, or surfing the Web for funny YouTube videos, she is desperately trying to spread awareness about the #1 viral cause of birth defects, congenital cytomegalovirus (CMV), the virus that eventually took my younger sister's life when she was only 16-years-old.
Because of her determination to prevent the spread of this virus, which causes more birth defects than Down syndrome, my mom takes time off of work, without pay, to talks at the Centers for Disease Control and Prevention (CDC), to nursing organizations, colleges such as Johns Hopkins, and other groups, to explain how to avoid contracting CMV.
My younger sister, Elizabeth, is the reason my mom sacrifices her time and energy to warning other mothers how to prevent the virus that handicapped her child. Besides writing to politicians, OB/GYNs, and connecting with other mothers of children with CMV through Facebook and other socialnetworks around the world, my mom has also written a humorous book, "Anything But a Dog! The perfect pet for a girl with congenital CMV," to warn others about the virus.
My mom writes:"The moment Elizabeth was born, I felt a stab of fear. My immediate thoughtwas 'Her head looks so small, so deformed.' The neonatologist declared, 'Your daughter has profound microcephaly--her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself.' He concluded that Elizabeth'sbirth defects were caused by congenital cytomegalovirus (CMV)--a virus that may have no symptoms for the mother, known as a 'silent virus,' or it maypresent itself with mild to severe flu-like symptoms to a mother during pregnancy."
More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists admitted they don't routinely caution their patients how to avoid the virus. Women who care for young children areat a greater risk for catching CMV because preschool children are the majority of the carriers. Although it is usually harmless to healthy individuals, it can be devastating to a developing fetus.
If you are interested in hearing more about my mom's mission to spread awareness by reaching one mother at a time, if that's what it takes, you can contact her directly at saundersbooks@aol.com or read this story about her in a New York paper at:
Her blog, http://congenitalcmv.blogspot.com/, contains links to the CDC's Web site and other organizations for more facts about CMV.
Thank you for your consideration.
Jackie Saunders
Mom's bio: Lisa Saunders is a full-time writer for the State University of New York at Rockland, a member of its Speakers Bureau and is a STOP CMV and Congenital CVM Foundation representative. A Cornell University graduate, she is the author of the humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV" as well as "Ride a Horse, Not an Elevator" and "Ever True: A Union Private and His Wife." Lisa and her husband, Jim, reside in Suffern, New York, with their Beagle/Bassett Hound. See Lisa's short TV news interview about CMV at: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28
See her books and articles at http://www.authorlisasaunders.com/
See her books and articles at http://www.authorlisasaunders.com/
Source info about CMV:
Other CMV Parents willing to be contacted about CMV are available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.
“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.htm
The 2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article on CMV in Fit Pregnancy Magazine, June/July 2008 issue, Article: Protect Your Baby From A Tot-Borne Virus or visit: www.fitpregnancy.com/yourbaby/babycare/40723077.html?subsection=baby_health_development
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 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov
The other 2008 Congenital CMV Conference co-sponsor, 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.
Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/ “If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm
Letter to TV Producers about CMV--H1N1 Not Only Virus to Fear
The H1N1 virus (swine flu) isn't the only virus pregnant women need to guard against.
Your audience would probably be interested to know how to protect their unborn children from the #1 viral cause of birth defects--congenital CMV (cytomegalovirus), which causes more birth defects than Down syndrome. Few women have heard of it and half of OB/GYN's surveyed admitted they don't warn their patients about it.
I can help you pull together a panel of congenital CMV experts and parents with children disabled by CMV to discuss how careful hand-washing and refraining from sharing utensils and towels with toddlers can reduce the chances of pregnant women contracting the virus.
I am the parent representative of the Congenital CMV Foundation and a STOP CMV rep. I didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband and me. Two months later, she died suddenly during a seizure.
I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
Fewer than half (44%) of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 reported having counseled their patients how to prevent CMV infection despite these figures from the CDC:
Your audience would probably be interested to know how to protect their unborn children from the #1 viral cause of birth defects--congenital CMV (cytomegalovirus), which causes more birth defects than Down syndrome. Few women have heard of it and half of OB/GYN's surveyed admitted they don't warn their patients about it.
I can help you pull together a panel of congenital CMV experts and parents with children disabled by CMV to discuss how careful hand-washing and refraining from sharing utensils and towels with toddlers can reduce the chances of pregnant women contracting the virus.
I am the parent representative of the Congenital CMV Foundation and a STOP CMV rep. I didn’t know about CMV prevention until my daughter, Elizabeth, was born disabled by the virus in 1989. The moment I saw her, I felt a stab of fear—her head was so small, so deformed. The neonatologist said, “If she lives, she will never roll over, sit up, or feed herself.” He was right. By her 16th birthday, Elizabeth had survived several bouts of pneumonia, seizures and major surgeries. Weighing only 50 pounds, she looked odd to strangers, but her cheerful, soul-capturing smile made her lovely to my husband and me. Two months later, she died suddenly during a seizure.
I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community of scientists and families about Elizabeth’s life. Mothers approached me after my speech, holding their young children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
Fewer than half (44%) of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) in 2007 reported having counseled their patients how to prevent CMV infection despite these figures from the CDC:
• Every hour, congenital CMV 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 (See: www.cdc.gov/cmv).
According 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.
CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses, who it can harm. Pregnant women can help prevent CMV by hand-washing and by refraining from kissing young children around the mouth.
The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.
My two minute TV news interview about CMV: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28
In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research if purchased through the National CMV Disease Registry. I also write about congenital CMV on my blog at: http://congenitalcmv.blogspot.com/
I am a full-time writer for the State University of New York at Rockland Community College, a member of its Speakers Bureau and a Cornell University graduate.
Please let me know if you would like the contact information for the country's leading CMV experts as well as the parents who have said they are willing to come on the show with their children (whose birth defects range from mild deafness to severe disabilities like my daughter).
To read about my CMV awareness work along with advice from internationally known CMV experts (one, Dr. Demmler-Harrison, said she would come on your show and I'm sure the others would if asked), visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
According 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.
CMV infection is very common in day care settings, but CMV usually does not harm the children who become infected. However, pregnant women who become infected with CMV are at high risk of passing the infection to their fetuses, who it can harm. Pregnant women can help prevent CMV by hand-washing and by refraining from kissing young children around the mouth.
The direct costs of caring for CMV-disabled children are estimated at $1-$2 billion annually.
My two minute TV news interview about CMV: www.wusa9.com/news/health/story.aspx?storyid=80502&catid=28
In an effort to warn those who have never heard of congenital CMV, I wrote a light-hearted memoir about my daughter’s life with her lazy, old devoted canine, called, “Anything But a Dog! The perfect pet for a girl with congenital CMV.” It raises funds for CMV research if purchased through the National CMV Disease Registry. I also write about congenital CMV on my blog at: http://congenitalcmv.blogspot.com/
I am a full-time writer for the State University of New York at Rockland Community College, a member of its Speakers Bureau and a Cornell University graduate.
Please let me know if you would like the contact information for the country's leading CMV experts as well as the parents who have said they are willing to come on the show with their children (whose birth defects range from mild deafness to severe disabilities like my daughter).
To read about my CMV awareness work along with advice from internationally known CMV experts (one, Dr. Demmler-Harrison, said she would come on your show and I'm sure the others would if asked), visit the Times Herald Record article: www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
Sincerely,
Lisa Saunders
Suffern, NY 10901
845-574-4244 (W)
http://www.authorlisasaunders.com/
Other sources of congenital CMV information:
The contact information of other CMV Parents willing to come on the show with their children is also available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.
To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm
CMV CDC site: http://www.cdc.gov/cmv/
“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.htm
2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus
Other sources of congenital CMV information:
The contact information of other CMV Parents willing to come on the show with their children is also available through the STOP CMV Action Network at: http://www.stopcmv.com/ STOP CMV was founded by Janelle Greenlee of Sunnyvale, California, the mother of twins, Riley and Rachel, born with congenital CMV in 2003.
To learn more about the work of the country’s leading CMV experts, visit: http://www.congenitalcmv.org/foundation.htm
CMV CDC site: http://www.cdc.gov/cmv/
“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.htm
2006 PubMed Central article, "Knowledge and Awareness of Congenital Cytomegalovirus Among Women," http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1779612
Article quoting OB/GYN why CMV prevention isn't discussed in Fit Pregnancy Magazine, June/July 2008 issue: Protect Your Baby From A Tot-Borne Virus
For more information about congenital CMV and how you can protect y our pregnancy, contact Gail J Demmler-Harrison MD, Professor of Pediatrics at Baylor College of Medicine, Director of Congenital CMV Disease Registry, Clinic and Research Program at gjdemmle@texaschildrenshospital.org, (832) 824-4387 or visit: www.bcm.edu/pedi/infect/cmv. The Registry supports CMV research, disseminates information and provides a parent support group. Demmler-Harrison said, “I have spent my entire medical professional career studying the effects of congenital CMV on children and helping these children and their families who have been touched by congenital CMV. It is the most common congenital infection in this country, yet ironically, most people have never heard of CMV, until it affects them personally.” Anything But a Dog! The perfect pet for a girl with congenital CMV raises funds for CMV research if purchased through the National CMV Disease Registry at: www.unlimitedpublishing.com/cmv
The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov He is the co-author of "Washing our hands of the congenital cytomegalovirus disease epidemic,” which can be seen at: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379 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.”
The other 2008 Congenital CMV Conference co-sponsor, 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. She 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.”
Quotes and advice:
One OB/GYN was quoted in FitPregnancy magazine as saying, "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”
In order to reduce the spread of CMV infection, women of childbearing age should refrain from kissing their children around the mouth, sharing food and utensils with them, and they must wash hands their hands diligently with soap and water after wiping runny noses, changing diapers, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.
“It is important to remember that CMV is most commonly spread in the family setting. Reason being is that in the home environment, families are more casual about hygiene and for instance may share eating and drinking utensils, food and beverages, or be hurried during diaper change and forget to immediately wash hands afterwards,” states Carol M. Griesser, R. N., Research Nurse and Clinical Coordinator, Congenital CMV Longitudinal Studies, National Congenital CMV Disease Registry, Baylor College of Medicine, Texas Children's Hospital.
Griesser suggests ways to keep the home and daycare environment safer: “Unlike some other viruses, cytomegalovirus is a very fragile virus that usually does not live on a surface beyond about 30 minutes time. Active CMV can be destroyed or rendered inactive by washing any contaminated objects with a 10% bleach solution (followed by rinsing the object). Objects that can't withstand the bleach solution disinfectant method, such as stuffed animals and pillows, should be put outside in direct sunlight for about a couple of hours.”
Prevention through hand-washing and hand sanitizers: “It is best to wash your hands with soap and clean running water for 20 seconds. However, if soap and clean water are not available, use an alcohol-based product to clean your hands. Alcohol-based hand rubs significantly reduce the number of germs on skin and are fast acting.” See: http://www.cdc.gov/cleanhands/ “If soap and running water are not available, you may use alcohol-based hand gel.” See http://www.cdc.gov/ncbddd/pregnancy_gateway/infection.htm) For a hand sanitizer to be effected, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol, See http://www.cdc.gov/ncidod/EID/vol12no03/05-0955.htm
Wednesday, March 11, 2009
Preventing birth defects virus--CMV (cytomegalovirus)
Through my public speaking, articles and book, Anything But a Dog! The perfect pet for a girl with congenital CMV, I am trying to prevent the #1 viral cause of birth defects, congenital CMV (cytomegalovirus), which causes more disabilities than Down syndrome.
My daughter was born severely disabled by it in 1989 and since her death in 2006, I've been distressed to learn that pregnant women are still not being warned that many toddlers carry this virus in their saliva (and other bodily fluids). Women need to be taught not to kiss their children around the mouth, share food with them, and to wash hands diligently after wiping runny noses, etc.
I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about my daughter Elizabeth. Mothers approached me after my speech, holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) admitted they don't routinely caution their patients about CMV. One was quoted in FitPregnancy magazine as saying "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”
For government information about CMV, visit the Centers for Disease Control and Prevention (CDC) at: www.cdc.gov/cmv/
The following is a short about my daughter Elizabeth Saunders and CMV prevention:
“Elizabeth: Forever Sweet 16 (because I caught CMV when pregnant)”
The moment Elizabeth was born, I felt a stab of fear. My immediate thought was "Her head looks so small — so deformed."
The neonatologist declared, "Your daughter has profound microcephaly — her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV) — a virus that may have no symptoms for the mother, known as a "silent virus," or it may present itself with mild to severe flu-like symptoms to a mother during pregnancy.
The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome.How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it as preschoolers are the majority of carriers. The virus is spread through bodily fluids such as saliva and urine. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Hands must be washed after wiping runny noses, diaper changes, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.
Why didn’t my OB/GYN tell me about CMV and how to prevent contracting it? While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.
It took about a year, but I eventually stopped praying that I'd be struck dead by lightening so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again--but it took a lot of help from family, friends, the Book of Psalms, and a couple of Valium! We were eventually able to move ahead as a happy, "normal" family.
Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us in the land of the living, surviving several bouts with pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was still a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.
Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, "Now be a good girl today." She smiled as she heard her teacher say what she said every time, "Elizabeth is always a good girl!" With that, I left.
At the end of the day, I got the call I had always feared."Mrs. Saunders, Elizabeth had a seizure and she's not breathing. We called 911."We met her ambulance at the hospital. The medical staff did all they could, but she was gone. After they unhooked her from everything, my husband Jim and I took turns holding her. While holding Elizabeth on his lap, Jim looked down into her partially open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did." I knew he was right. No one adored us as much as Elizabeth.
It has been three years since we lost Elizabeth (1989-2006). At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her — never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she be cold or sick. For the remainder of my days Elizabeth will be forever "Sweet Sixteen."Today, my sorrow is gradually being replaced by a passion to prevent others from going through what Elizabeth did. To learn more about CMV prevention and emerging treatments, see pictures of Elizabeth with her devoted old dog, or to read an excerpt of my memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV", visit my Web site at http://www.authorlisasaunders.com/
Please help me stop the spread of CMV! If you would like me to speak to your group about CMV prevention, please email me at: saundersbooks@aol.com
Lisa Saunders, Suffern, NY
The Times Herald Record wrote about my CDC speech, work in CMV prevention, and included quotes from internationally known CMV experts in this article: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
To watch my short TV news interview about CMV, please click into: http://www.wusa9.com/video/default.aspx?aid=70445&storyid=80502
To hear me for 52 minutes, listen to my radio interview at: http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3
My daughter was born severely disabled by it in 1989 and since her death in 2006, I've been distressed to learn that pregnant women are still not being warned that many toddlers carry this virus in their saliva (and other bodily fluids). Women need to be taught not to kiss their children around the mouth, share food with them, and to wash hands diligently after wiping runny noses, etc.
I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about my daughter Elizabeth. Mothers approached me after my speech, holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my OB/GYN warn me about CMV?"
More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) admitted they don't routinely caution their patients about CMV. One was quoted in FitPregnancy magazine as saying "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.”
For government information about CMV, visit the Centers for Disease Control and Prevention (CDC) at: www.cdc.gov/cmv/
The following is a short about my daughter Elizabeth Saunders and CMV prevention:
“Elizabeth: Forever Sweet 16 (because I caught CMV when pregnant)”
The moment Elizabeth was born, I felt a stab of fear. My immediate thought was "Her head looks so small — so deformed."
The neonatologist declared, "Your daughter has profound microcephaly — her brain is very small with calcium deposits throughout. If she lives, she will never roll over, sit up, or feed herself." He concluded that Elizabeth's birth defects were caused by congenital cytomegalovirus (CMV) — a virus that may have no symptoms for the mother, known as a "silent virus," or it may present itself with mild to severe flu-like symptoms to a mother during pregnancy.
The Centers for Disease Control and Prevention (CDC) estimates that about one in 150 children is born with CMV infection and approximately one in 750 is born with or develops permanent disabilities because of it. CMV is the #1 viral cause of mental retardation and hearing loss—more common a cause of disabilities than Down syndrome.How and why did I catch this virus that I had barely heard of? I read the CMV literature. It stated that women who care for young children are at a higher risk for catching it as preschoolers are the majority of carriers. The virus is spread through bodily fluids such as saliva and urine. Pregnant women need to be careful not to kiss young children on or around the mouth or share food or towels with them. Hands must be washed after wiping runny noses, diaper changes, etc. The CDC states: “If soap and running water are not available, you may use alcohol-based hand gel.” For alcohol-based hand sanitizers to be effective, the Food and Drug Administration (FDA) recommends a concentration of 60% to 95% ethanol or isopropanol.
Why didn’t my OB/GYN tell me about CMV and how to prevent contracting it? While I was pregnant with Elizabeth, I not only had a toddler of my own, but also ran a licensed daycare center in my home. I felt sick at what my ignorance had done to my little girl. In milder cases, children with congenital CMV may lose hearing or struggle with learning disabilities later in life. But Elizabeth's case was not a mild one.
It took about a year, but I eventually stopped praying that I'd be struck dead by lightening so I could escape my overwhelming anguish over Elizabeth's condition. Life did become good again--but it took a lot of help from family, friends, the Book of Psalms, and a couple of Valium! We were eventually able to move ahead as a happy, "normal" family.
Sixteen years after her birth, I awoke feeling so proud of Elizabeth on her birthday. She had fought hard to stay with us in the land of the living, surviving several bouts with pneumonia, seizures and surgeries. Weighing only 50 pounds, she looked odd to strangers as a result of her small head and big adult teeth, but she was lovely to us with her long, thick brown hair, large blue eyes and soul-capturing smile. Although Elizabeth was still in diapers, and could not speak or hold up her head, she was still a very happy little girl, with a love of adventure— long car rides being one of her favorite activities. She especially loved going to school and being surrounded by people, paying no mind to the stares of other children who approached her in public. She smiled at anyone who would stroke her hair or cheek. When she wasn't busy, she sat propped on our couch watching cartoons with a big, lazy dog we got from an animal shelter.
Less than two months after she turned 16, I dropped Elizabeth off at school. Strapping her into her wheelchair, I held her face in my hands, kissed her cheek, and said, "Now be a good girl today." She smiled as she heard her teacher say what she said every time, "Elizabeth is always a good girl!" With that, I left.
At the end of the day, I got the call I had always feared."Mrs. Saunders, Elizabeth had a seizure and she's not breathing. We called 911."We met her ambulance at the hospital. The medical staff did all they could, but she was gone. After they unhooked her from everything, my husband Jim and I took turns holding her. While holding Elizabeth on his lap, Jim looked down into her partially open, lifeless eyes and cried, "No one is ever going to look at me again the way Elizabeth did." I knew he was right. No one adored us as much as Elizabeth.
It has been three years since we lost Elizabeth (1989-2006). At times I miss her so much I can barely breathe. Yet at other times, I feel happy for her — never again will I see that look of terror in her eyes as a seizure begins and she can't catch her breath. Never again will she be cold or sick. For the remainder of my days Elizabeth will be forever "Sweet Sixteen."Today, my sorrow is gradually being replaced by a passion to prevent others from going through what Elizabeth did. To learn more about CMV prevention and emerging treatments, see pictures of Elizabeth with her devoted old dog, or to read an excerpt of my memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV", visit my Web site at http://www.authorlisasaunders.com/
Please help me stop the spread of CMV! If you would like me to speak to your group about CMV prevention, please email me at: saundersbooks@aol.com
Lisa Saunders, Suffern, NY
The Times Herald Record wrote about my CDC speech, work in CMV prevention, and included quotes from internationally known CMV experts in this article: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
To watch my short TV news interview about CMV, please click into: http://www.wusa9.com/video/default.aspx?aid=70445&storyid=80502
To hear me for 52 minutes, listen to my radio interview at: http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3
Book Prevents Birth Defects
Preventing birth defects by memoir
Publisher: www.unlimitedpublishing.com/saunders
You may have seen the big news item published by Reuters (Dec. '08) about hearing loss and congenital CMV (cytomegalovirus)--the #1 viral cause of birth defects, which causes more disabilities than Down syndrome. Although largely preventable, OB/GYNs do not routinely warn their pregnant patients how to avoid contracting CMV.
I am the parent representative of the Congenital CMV Foundation and wrote my light-hearted memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus), recently published by Unlimited Publishing LLC, in an effort to teach the public how to spare their unborn children from congenital CMV and to raise funds for CMV research. Through the use of humor, honesty, a series of disastrous pets and a big, homeless dog's devotion to my severely disabled daughter, my book is beginning to attract an audience that has never heard of CMV. In the closing chapter, I include highly useful resources, contacts and support for anyone whose life is touched by CMV. For an excerpt, see: http://anythingbutadog.blogspot.com/
I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about my daughter Elizabeth who was born with severe cerebral palsy and mental retardation in 1989 as a result of congenital CMV. Mothers approached me after my speech, holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my doctor warn me about CMV?"
I am the parent representative of the Congenital CMV Foundation and wrote my light-hearted memoir, Anything But a Dog! The perfect pet for a girl with congenital CMV (cytomegalovirus), recently published by Unlimited Publishing LLC, in an effort to teach the public how to spare their unborn children from congenital CMV and to raise funds for CMV research. Through the use of humor, honesty, a series of disastrous pets and a big, homeless dog's devotion to my severely disabled daughter, my book is beginning to attract an audience that has never heard of CMV. In the closing chapter, I include highly useful resources, contacts and support for anyone whose life is touched by CMV. For an excerpt, see: http://anythingbutadog.blogspot.com/
I was invited to speak at the international 2008 Congenital CMV Convention held at the Centers for Disease Control and Prevention (CDC) in Atlanta, GA, to a community scientists and families about my daughter Elizabeth who was born with severe cerebral palsy and mental retardation in 1989 as a result of congenital CMV. Mothers approached me after my speech, holding their children wearing hearing aids, or pushing them in wheelchairs, and wanted to know the same thing: "Why didn’t my doctor warn me about CMV?"
More than half of OB/GYNs surveyed by the American College of Obstetricians and Gynecologists (ACOG) admitted they don't routinely caution their patients about CMV. One was quoted in FitPregnancy magazine as saying "The list of things we're supposed to talk about during women's first visit could easily take two hours and scare them to death.” To prevent CMV infection, pregnant women need to wash their hands often when caring for young children and refrain from kissing them around the mouth. CMV infection is often symptomless in healthy individuals but can be devastating to the unborn if their mothers contract it for the first time during the pregnancy.
For government information about CMV, visit the Centers for Disease Control and Prevention (CDC) at: www.cdc.gov/cmv/
Reviews of Anything But a Dog! The perfect pet for a girl with congenital CMV:
"Saunders weaves laughter and tears, congenital CMV education and the challenges of raising two daughters – one a tomboy and the other severely disabled." Times Herald Record, http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
“Sheds light on a disorder that is preventable and not talked about enough… If you're an animal lover, you'll love the critter tales as much as the special-needs storyline...really lifted my spirits." About.com, http://specialchildren.about.com/od/booksonfamilyissues/gr/anythingbutadog.htm
“Saunders takes readers on a road trip as harrowing as any Dog Whisperer training challenge… Beyond the laughs about a dizzying pet search, Saunders' dog tale is about a mother who candidly reveals her family's burden, love, and acceptance of a daughter born with severe disabilities-and the people, and pets, forever touched by her life.“ Rockland Magazine, http://lohud.com/article/20081030/CUSTOM04/810300556/1277
"Very touching, moving, personal; a joy to read. I laughed out loud and I cried. I congratulate Lisa on producing a very good piece of work.” Gail J Demmler-Harrison MD, Professor of Pediatrics, Director of the Congenital CMV Disease Registry and Research Program, Baylor College of Medicine, Houston, Texas
PURCHASING OPTIONS:
National CMV Disease Registry: If purchased through them, a percent is donated to CMV research. See: http://www.unlimitedpublishing.com/cmv/
Amazon.com: http://www.amazon.com/gp/offer-listing/1588329968/ref=dp_olp_collectible?ie=UTF8&qid=1233413673&sr=8-1&condition=collectible
For government information about CMV, visit the Centers for Disease Control and Prevention (CDC) at: www.cdc.gov/cmv/
Reviews of Anything But a Dog! The perfect pet for a girl with congenital CMV:
"Saunders weaves laughter and tears, congenital CMV education and the challenges of raising two daughters – one a tomboy and the other severely disabled." Times Herald Record, http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
“Sheds light on a disorder that is preventable and not talked about enough… If you're an animal lover, you'll love the critter tales as much as the special-needs storyline...really lifted my spirits." About.com, http://specialchildren.about.com/od/booksonfamilyissues/gr/anythingbutadog.htm
“Saunders takes readers on a road trip as harrowing as any Dog Whisperer training challenge… Beyond the laughs about a dizzying pet search, Saunders' dog tale is about a mother who candidly reveals her family's burden, love, and acceptance of a daughter born with severe disabilities-and the people, and pets, forever touched by her life.“ Rockland Magazine, http://lohud.com/article/20081030/CUSTOM04/810300556/1277
"Very touching, moving, personal; a joy to read. I laughed out loud and I cried. I congratulate Lisa on producing a very good piece of work.” Gail J Demmler-Harrison MD, Professor of Pediatrics, Director of the Congenital CMV Disease Registry and Research Program, Baylor College of Medicine, Houston, Texas
PURCHASING OPTIONS:
National CMV Disease Registry: If purchased through them, a percent is donated to CMV research. See: http://www.unlimitedpublishing.com/cmv/
Amazon.com: http://www.amazon.com/gp/offer-listing/1588329968/ref=dp_olp_collectible?ie=UTF8&qid=1233413673&sr=8-1&condition=collectible
Publisher: www.unlimitedpublishing.com/saunders
ABOUT ME:
I am a full-time writer for the State University of New York at Rockland Community College, a member of its Speakers Bureau and the Congential CMV Foundation parent representative and a STOP CMV area rep. My husband Jim and I live in the lower Hudson Valley with our beagle/Basset hound.
To see a write-up about my speech at the CDC, my efforts in CMV prevention and quotes from the doctors I work with, see: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
To watch my very short news interview (1.5 min.) about CMV, click into: http://video.aol.com/video-detail/coping-with-cmv/3443071507
To listen to a long radio interview (52 min): http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3
Please help me prevent birth defects!
Sincerely,
Lisa Saunders
Suffern, NY
http://www.authorlisasaunders.com/
I am a full-time writer for the State University of New York at Rockland Community College, a member of its Speakers Bureau and the Congential CMV Foundation parent representative and a STOP CMV area rep. My husband Jim and I live in the lower Hudson Valley with our beagle/Basset hound.
To see a write-up about my speech at the CDC, my efforts in CMV prevention and quotes from the doctors I work with, see: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
To watch my very short news interview (1.5 min.) about CMV, click into: http://video.aol.com/video-detail/coping-with-cmv/3443071507
To listen to a long radio interview (52 min): http://www.achieveradio.com/archplayer.php?showname=Fearlessly%20Speaking%20%20with%20Jacqueline%20Wales&ShowURL=http://audio.achieveradio.com/fearless-fifties/Mar-08-2009-at-02-00PM---Fearlessly_Speaking.mp3
Please help me prevent birth defects!
Sincerely,
Lisa Saunders
Suffern, NY
http://www.authorlisasaunders.com/
Wednesday, February 11, 2009
Saturday, January 24, 2009
Times Herald Record Raises CMV Awareness
FOR IMMEDIATE RELEASE
January 26, 2009
Lisa Saunders
Suffern, NY
Pregnant Women Unaware Saliva of Young Children Potentially Harmful to Unborn
January 26, 2009
Lisa Saunders
Suffern, NY
saundersbooks@aol.com
Doctors Don’t Teach Prevention of #1 Birth Defects Virus MORE COMMON THAN DOWN SYNDROME
Doctors Don’t Teach Prevention of #1 Birth Defects Virus MORE COMMON THAN DOWN SYNDROME
Pregnant Women Unaware Saliva of Young Children Potentially Harmful to Unborn
Suffern, N.Y. --On Jan. 21, the Times Herald Record published interviews with internationally known CMV experts about the #1 viral cause of birth defects--congenital cytomegalovirus (CMV), which is more common than Down syndrome. Most women have never heard how to protect themselves from contracting it during pregnancy.
The article, “What every pregnant woman needs to know,” by Deborah J. Botti, which includes an interview with Michael J. Cannon, Ph.D., a research epidemiologist at the Disease Control and Prevention (CDC ), addresses the controversy between CMV researchers regarding the benefits of routinely screening pregnant women for the disease. There is, however, little controversy about CMV’s devastating toll and the need for a prevention message.
Excerpt: “According to the CDC, CMV causes more permanent disabilities than Down syndrome, fetal alcohol syndrome, spina bifida or neural tube defects; yet, few people have heard of it. CMV is responsible for an estimated 400 deaths and about 8,000 children born with permanent disabilities each year.
“And CMV could potentially be responsible for far more disabilities because congenital CMV can only be conclusively diagnosed within the first three weeks of birth, and sometimes symptoms aren't seen for months or even years.
"’Nobody's even measured this yet in terms of mild learning disabilities," says Cannon of the virus that can cause hearing loss, vision loss, neurodevelopmental disabilities, small head size, growth delays and problems with the spleen, liver and lungs.” See full article, which includes photos of a little girl disabled by congenital CMV along with her mother, Lisa Saunders, Stop CMV and Congenital CMV Foundation parent representative, at: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
“And CMV could potentially be responsible for far more disabilities because congenital CMV can only be conclusively diagnosed within the first three weeks of birth, and sometimes symptoms aren't seen for months or even years.
"’Nobody's even measured this yet in terms of mild learning disabilities," says Cannon of the virus that can cause hearing loss, vision loss, neurodevelopmental disabilities, small head size, growth delays and problems with the spleen, liver and lungs.” See full article, which includes photos of a little girl disabled by congenital CMV along with her mother, Lisa Saunders, Stop CMV and Congenital CMV Foundation parent representative, at: http://www.recordonline.com/apps/pbcs.dll/article?AID=/20090121/HEALTH/901210313
To hear the CDC’s podcast about CMV prevention that is available for use by the media, listen to: Staying Healthy When a Baby's on the Way (0:59 minutes)
In December, Reuters raised awareness of the disease in the article, "Mom's infection raises risk of infant hearing loss," seen at http://www.reuters.com/article/healthNews/idUSTRE4BM4RV20081223
Contacts: For more information about the article, contact reporter, Deborah J. Botti, at anybotti@hvc.rr.com. For more information about congenital CMV, visit http://www.cdc.gov/cmv/ or contact Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at mcannon@cdc.gov; Gail J Demmler-Harrison 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 or call (832) 824-4387; or contact Congenital CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, 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 contact a parent willing to speak about their child’s experience with congenital CMV, e-mail Lisa Saunders, author of the humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," at saundersbooks@aol.com or visit http://www.stopcmv.com/ to find a STOP CMV representative near you.
Contacts: For more information about the article, contact reporter, Deborah J. Botti, at anybotti@hvc.rr.com. For more information about congenital CMV, visit http://www.cdc.gov/cmv/ or contact Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, at mcannon@cdc.gov; Gail J Demmler-Harrison 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 or call (832) 824-4387; or contact Congenital CMV Foundation founder, Lenore Pereira, Ph.D., Professor, Microbiology and Virology, Cell and Tissue Biology Department, University of California San Francisco, 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 contact a parent willing to speak about their child’s experience with congenital CMV, e-mail Lisa Saunders, author of the humorous memoir, "Anything But a Dog! The perfect pet for a girl with congenital CMV," at saundersbooks@aol.com or visit http://www.stopcmv.com/ to find a STOP CMV representative near you.
“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 Registry at www.unlimitedpublishing.com/cmv
The 2008 Congenital CMV Conference was co-sponsored by the CDC and the Congenital CMV Foundation. The CDC co-organizer, Michael J. Cannon, Ph.D., Research Epidemiologist, CDC, can be reached at mcannon@cdc.gov He and Dr. Davis stated in their article, “Washing our hands of the congenital cytomegalovirus disease epidemic,” that “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.” See: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1182379
Thursday, January 8, 2009
CDC Releases CMV E-Cards
This link has CMV prevention e-cards to send to your friends plus podcasts to listen to:
http://www.cdc.gov/Features/Cytomegalovirus/
http://www.cdc.gov/Features/Cytomegalovirus/
Friday, January 2, 2009
Reuters Article: Congenital CMV
Reuters recently published an article about the #1 viral cause of birth defects, congenital CMV (cytomegalovirus). See "Mom's infection raises risk of infant hearing loss" at http://www.reuters.com/article/healthNews/idUSTRE4BM4RV20081223
I am the mother of a daughter disabled by congenital CMV. I was never warned how to prevent contracting this virus even though it is a more common cause of disabilities than Down syndrome. I am the parent rep for the Congenital CMV Foundation and spoke at the international 2008 Congenital CMV Conference at the Centers for Disease Control and Prevention (CDC) in Atlanta. I would like to see OB/GYNs warn their patients about CMV and teach them the CDC’s recommendations for avoiding it (careful handwashing, being cautious around the saliva of young children, etc). If people are interested in learning more about my daughter's life with congenital CMV; a big, homeless dog's devotion to her, and the latest news on CMV prevention and treatment, they can view the National Congenital CMV Disease Registry's special edition of my humorous memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” on http://www.unlimitedpublishing.com/cmv/ If copies are purchased through that link, a percent of the profits are donated to congenital CMV research and parent support.
Lisa Saunders
Suffern, New York
www.authorlisasaunders.com
I am the mother of a daughter disabled by congenital CMV. I was never warned how to prevent contracting this virus even though it is a more common cause of disabilities than Down syndrome. I am the parent rep for the Congenital CMV Foundation and spoke at the international 2008 Congenital CMV Conference at the Centers for Disease Control and Prevention (CDC) in Atlanta. I would like to see OB/GYNs warn their patients about CMV and teach them the CDC’s recommendations for avoiding it (careful handwashing, being cautious around the saliva of young children, etc). If people are interested in learning more about my daughter's life with congenital CMV; a big, homeless dog's devotion to her, and the latest news on CMV prevention and treatment, they can view the National Congenital CMV Disease Registry's special edition of my humorous memoir, “Anything But a Dog! The perfect pet for a girl with congenital CMV,” on http://www.unlimitedpublishing.com/cmv/ If copies are purchased through that link, a percent of the profits are donated to congenital CMV research and parent support.
Lisa Saunders
Suffern, New York
www.authorlisasaunders.com