Doctors do not routinely warn women of childbearing years how to prevent contracting this virus that causes more disabilities than Down syndrome. This message should be, but is not, as well-known as "don't change kitty litter when you are pregnant." Probably because no one really wants to hear that they shouldn't kiss a toddler around the mouth or share cookies with them.
Much of my writing work since the death of my daughter Elizabeth (see her headstone) has centered around trying to raise a prevention message about congenital CMV (cytomegalovirus). It is the disease that disabled and ultimately killed her (she died during a seizure).
If interested in helping raise awareness of congenital CMV and/or encouraging women to participate in an ongoing, national treatment trial,* see below, or I would be happy to speak to you.
I try to broadcast a congenital CMV prevention message through my speaking and writing. I hope to reach my goals as the parent representative of the Congenital CMV Foundation, a local TV co-host, speaking at international congenital CMV conferences (2008, 2012) co-sponsored by the CDC, and most recently, I spoke at a conference sponsored by the Infection Control Nurses of Connecticut (April '13). My books, including my humorous and historical travel memoir, Mystic Seafarer's Trail, reveal my desire to become thin and famous like Amelia Earhart so people will listen to my CMV prevention message; and Anything But a Dog! The perfect pet for a girl with congenital CMV, about my disabled daughter growing up beside her tomboy sister and a lazy, old devoted canine (it includes interviews with the country's leading congenital CMV experts and raises funds for CMV research if purchased through the National Congenital CMV Disease Registry and Research Program). In an effort to share the comfort I received from my father's fairytale after my daughter died, I published Surviving Loss: The Woodcutter's Tale, which includes comments on grieving from a Mystic based licensed clinical social worker(it's available as a free e-book at Smashwords).
Thank you for reading this and spreading the news about CMV prevention. If you would like to speak to me personally about this disease, I will be autographing my book, Mystic Seafarer's Trail, at Bartleby's Café in downtown Mystic on Saturday, June 1, 9 am - Noon.
Sincerely,
Lisa Saunders
Mystic, CT 06355
saundersbooks@aol.com
Lisa's congenital CMV blog: http://congenitalcmv.blogspot.com/"
*If interested in the national treatment trial, please contact: Brenna Anderson, M.D., M.Sc., Women & Infants Hospital of RI, banderson@wihri.org, 401-274-1122 ext. 7456. See the following recent news clip that highlights another child disabled by congenital CMV, the ongoing national clinical trial seeking the benefits of a particular treatment, and another mother's work to raise awareness: Clinical trial puts congenital CMV in spotlight for pregnant women ...
