Cause of Hearing Loss - Treacher Collins Syndrome

Treacher Collins Syndrome is not that common, but whenever I met someone who had it, I knew right away. This was apparent from their facial appearance, because Treacher Collins is a (one in 10,000 births) genetic syndrome that causes facial disfigurement and hearing loss.

Symptoms of Treacher Collins Syndrome

People with Treacher Collins syndrome have normal intelligence (although children may have some developmental delay). The physical symptoms include:

• A small chin
• Improperly formed ears
• Wide mouth
• Hearing loss (usually conductive)
• Respiratory problems

Hearing Loss in Treacher Collins

People with Treacher Collins often use conductive hearing aids such as bone conduction (or bone anchored) hearing aids because their ears are too malformed for an earmold. BAHA from Entific Medical Systems is an example of a bone anchored hearing aid. Bone anchored aids are often preferred to bone conduction aids, because the former involves an implanted screw in the bone, while a bone conduction aid involves the wearing of bands.

Support for People with Treacher Collins

There are organizations and websites to aid people and families with Treacher Collins. These resources include:

• The Treacher Collins Foundation (based in Norwich, Vermont) has a newsletter, a bibliography, and a glossary of the vocabulary associated with Treacher Collins.
• The TCS Forum, for people to discuss Treacher Collins syndrome with each other.
• Yahoo Groups has a Treacher Collins discussion list.
• The National Craniofacial Association has a Treacher Collins FAQ, plus a listing of resources for parents.