Nancy O’Donnell, Coordinator of Special Projects,
Helen Keller National Center for Deaf-Blind Youths and Adults

Rubella. This simple word can cause terror in pregnant women. If a mother contracts rubella in the first trimester of pregnancy, there is a strong chance that her child will be born with one or more health issues related to congenital rubella syndrome” or CRS.

In the United States, between 1963 and 1966, an estimated 20,000 children were born deaf, blind, with heart problems and/or developmental delays due to CRS. With the introduction of the rubella vaccine in 1969 and the subsequent immunization campaign in the U.S., the number of births of children with CRS quickly   declined. In March of 2005, the Centers for Disease Control and Prevention in Atlanta, GA, announced that rubella had indeed been “eliminated” in the U.S. Yet, our response to this wonderful announcement must be tempered, for although “rubella” has been eliminated, adults with congenital rubella syndrome continue to live with the devastating effects of this virus.

Late Onset Manifestations

In 1941, Dr. Norman Gregg, an Australian ophthalmologist, was the first medical professional to propose a link between maternal rubella and a high incidence of congenital cataracts in babies born 9 months later. Twenty-five years later, an  inquisitive group of Australian researchers      wondered what the long-term effects of rubella might be in those born with CRS in the 1941 epidemic. These researchers conducted the first longitudinal study on this topic. Their findings  suggested “late onset health manifestations” in adults with CRS – the most notable of which were higher than expected rates of glaucoma, diabetes and thyroid disorder.

The Helen Keller National Center (HKNC) became aware of this research in the late 1980s, when deaf-blind children born in the epidemic of the 1960s were aging out of the educational system and challenging adult service  agencies. HKNC surveyed families, consumers with CRS and service providers to see what was happening in our young adults. Diabetes, glaucoma, hyper and hypo-thyroidism, premature aging, esophageal problems and, in rare cases, a degenerative process to the whole body were reported. These sobering  results prompted HKNC to continue monitoring this group and encouraged other countries to do similar surveys or testing.

International Scope

Despite increased vaccination efforts, the World Health Organization estimates that 100,000 babies continue to be born yearly, worldwide, with CRS. For many reasons, the number of medical professionals, internationally, who are experienced in working with adults with CRS is quite small. Recognizing the need for information sharing and support, HKNC established two listservs on the topic of CRS and hosted an international symposium in March 2005. With the support of representatives from 12 countries, an application was made to Deafblind International to create a new network on “Rubella.” Our first meeting was held at the DBI conference in Perth, Australia, 25-30 September 2007. We hope to continue to raise awareness of the late onset manifestations in adults with CRS, encourage additional research, share   information and maintain a database of professionals who are willing to be resources. We also hope to encourage research within the “deaf rubella” world in order to strengthen our knowledge of late onset health challenges and their impact on quality of life issues, including employment.

For more information, contact Nancy O’Donnell, Coordinator of Special Projects, Helen Keller National Center for Deaf-Blind Youths and Adults, 141 Middle Neck Road, Sands Point, NY 11050 516-944-8900 ext 326;  hkncnod@aol.com or go to our website www.hknc.org