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Fall 2001 Table of Contents
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Cytomegalovirus - Parent to Parent Support

By Kate Moss, Family Specialist,

TSBVI, Texas Deafblind Outreach

In looking at the 2001 Texas Deafblind Census, I became aware that twenty-seven (27) children on the Census were identified as having become deafblind as a result of Congenital Cytomegalovirus or CMV. This often benign infection which results in mild flu-like symptoms for most individuals, can have devastating consequences for the child who contracts the disease in utero. I recently became aware of a great website provided by the National Congenital CMV Disease Registry in Houston. This website can be found at http://www.bcm.tmc.edu/pedi/infect/cmv/index.htm. One of the features of this website and organization is a Parent to Parent connection service. This contact is meant to help parents by facilitating information exchange and general support. Anyone who is interested may join this group of parents. You simply need to visit the website and complete the information request form, or you may write to:

National Congenital CMV Disease Registry
Feigin Center, Suite 1150
1102 Bates Street, MC 3-2371
Houston, Texas 77030-2399

The National Congenital CMV Disease Registry also provides a variety of other services families might want to know about, such as fact sheets and interesting articles on CMV, questions and answers, a newsletter, links to other resources and information on current research.

If your child has been disabled by congenital CMV infection, you may want to connect with this organization. If you are a professional working with children who have CMV infection, visit the website to learn more about this disease.

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Last Revision: July 30, 2002