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Deaf-Blindness: What to Know

Medically Reviewed by Brunilda Nazario, MD on July 21, 2021

What Is Deaf-Blindness?

Deaf-blindness means you have some loss of both your hearing and vision -- enough to cause serious problems in the way you communicate, work, and learn. Some people with deaf-blindness can't hear or see at all. Others have varying amounts of hearing and vision.

There are around 50,000 deaf-blind people in the U.S. About 11,000 of them are under age 21.

In most cases, people with deaf-blindness also have other physical and mental disabilities or complicated health needs.

What Causes Deaf-Blindness?

There are more than 70 causes of deaf-blindness. The most common are premature birth and CHARGE syndrome. CHARGE syndrome is a pattern of birth defects that affect the heart, genitals, eyes, and ears, among other areas.

Several other disorders you're born with or inherit can cause deaf-blindness, including:

  • Usher syndrome. This causes ear abnormalities and eye disease, which lead to hearing and vision loss that gets worse over time.
  • Down syndrome. People with Down syndrome are at higher risk for birth defects and other problems that cause hearing and vision loss.
  • Stickler syndrome. This is a group of genetic conditions that lead to a distinct facial appearance along with eye and ear problems.
  • Dandy-Walker syndrome. In this condition, a part of your brain called the cerebellum doesn't develop properly. Among other problems, it can cause fluid to build up and put pressure on the brain.
  • Goldenhar syndrome. This mainly affects the ears, eyes, and spine, and also causes unevenness in the face.

Certain complications that affect babies before or at birth also cause deaf-blindness. They include:

  • Congenital cytomegalovirus. Babies can be born with this virus. It affects the brain, liver, lungs, and hearing, among other things.
  • Hydrocephalus. This is a buildup of spinal fluid that puts pressure on the brain.
  • Microcephaly. This happens when a baby’s head is smaller than normal. It can happen on its own or as a symptom of another condition.

Some people are born with either a vision or hearing problem, then develop the other impairment later on because of an illness or injury.

What Support Do You Need With Deaf-Blindness?

People with deaf-blindness have challenges with communication. In many cases, you can learn how to better use the vision and hearing that you still have. Training from rehabilitation experts can help with this. Some of the strategies they might recommend include:

  • Stick to smaller groups.
  • Look for quiet spaces without background noise.
  • Learn to ask others for clarification.
  • Repeat your understanding of another’s idea.
  • Use a phone or other digital device to write or text communication.

Sign language can help those with enough vision to see it. If you don't, you can learn a “tactile” form of sign language that uses touch. The deaf-blind person puts their hands over those of the signer to feel what that person is saying. They reply with taps, pressure, finger shapes, and other touch methods.

You can also get devices that can help you understand others and express yourself. They include things like Braille TTYs (sometimes called text telephones).

Education is often a challenge as well. Each deaf-blind child needs a program that addresses their particular educational needs. They'll need frequent evaluations as well as support from teachers and their families. Every state in the U.S. has a federally funded deaf-blind project to provide training and help to educators and parents.

At school or elsewhere, a child or adult with deaf-blindness may need help from a specialist, sometimes known as an “intervener.” This qualified assistant helps the person with deaf-blindness navigate their environment and communicate with others. This assistance is often essential for deaf-blind people in new places or situations where they don’t know the people, language, or surroundings.

WebMD Medical Reference

Sources

SOURCES:

American Association for the Deaf-Blind: "Frequently Asked Questions About Deaf-Blindness."

American Speech-Language-Hearing Association: “Augmentative and Alternative Communication (AAC).”

Center for Parent Information and Resources: “Deaf-Blindness.”

Institut Nazareth et Louis-Braille: “Communication between people with

deafblindness: how could it be facilitated?”

National Center on Deaf-Blindness: “Deaf-Blindness Overview.”

National Library Service For The Blind And Print Disabled: “Deaf-Blindness.”

Oregon Deaf-Blind Project: “Four basic categories of Deafblindness.”

Perkins School for the Blind: “Total Communication.”

U.S. National Library of Medicine: “CHARGE syndrome.”

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