Deaf-Blindness

Most people who are deaf-blind have a combination of vision and hearing loss. They usually have some useful but not always reliable vision and hearing. Some people have little or no useable hearing and vision.

For example, a person may be born deaf or hard of hearing and lose his or vision later in life. Another person may grow up as a blind or visually impaired person and experience a hearing loss later. Some people are born with combined vision and hearing loss, or lose their vision and hearing at an early age.

A study commissioned by the Department of Education in 1980 estimated that between 42,000 and 700,000 individuals have some level of both vision and hearing loss. The National Association of Regulatory Utility Commissions (NARUC) estimates that 70,000-100,000 people living in the United States are deaf-blind.

About 50 percent of people in the deaf-blind community have Usher Syndrome. This is a genetic condition where a person is born deaf or hard of hearing, or with normal hearing, and loses his or her vision later on in life from retinitis pigmentosa (RP). There are three kinds of Usher Syndrome. If a person has Usher 1, she is born deaf, and starts to lose her vision usually in the teen years. If a person has Usher Syndrome 2, he is born hard of hearing and starts to lose his vision later on. With Usher 3, a person is usually born with normal vision and hearing, or with a mild hearing loss, and start to lose both senses later in life.

Other common causes of deaf-blindness include birth trauma, optic nerve atrophy, cataracts, glaucoma, macular degeneration, or diabetic retinopathy. Some people may be born with both hearing and visual impairments through birth trauma or rare causes such as CHARGE Syndrome or cortical visual impairment. Others may become deaf-blind through accidents or illnesses.

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