DeafBlind 101: An Introduction to Combined Hearing and Vision Loss
Photo of a smiling woman who is DeafBlind

There are many causes of congenital deafblindness, including Usher syndrome, which accounts for more than half of all deafblindness in the United States.

People can be born deafblind or born with a congenital syndrome, such as Usher Syndrome, that eventually leads to deafblindness. Some of the most common congenital causes of deafblindness in the United States are:

Usher Syndrome

Usher Syndrome is a genetic condition that accounts for more than 50 percent of the deafblindness in the United States. It’s progressive, meaning that the hearing and vision of a person with Usher Syndrome will deteriorate over time. A person with Usher Syndrome is typically born deaf or hard of hearing then later loses his or her vision due to retinitis pigmentosa. There is no effective treatment for Usher Syndrome and the person will lose all or most of both senses eventually.

CHARGE Syndrome

CHARGE Syndrome is a complex genetic syndrome that occurs in about one of every 10,000 births worldwide and affects many areas of the body. Most people with CHARGE Syndrome have hearing loss, vision loss, and balance problems.

Congenital Rubella Syndrome (CRS)

Congenital Rubella Syndrome (CRS) occurs when a woman contracts rubella, or German measles, during the first trimester of her pregnancy and passes it on to the developing fetus, causing the child to be born deaf, blind, with cardiac problems, developmental delays and other medical conditions. Thanks to regular vaccinations, CRS is increasingly rare. However, between 1964 and 1965, there was a worldwide epidemic of rubella. In the United States alone, approximately 20,000 children were born with CRS. These people would now be in their late 40s.