Years ago, I saw a picture of waiting hard of hearing child in an adoption photolisting. The child had Goldenhar syndrome. That was my first exposure to Goldenhar syndrome, as I have never met anyone with this condition that has hearing loss as one of several characteristics.
It was first labeled in 1952 by a doctor named Goldenhar. It seems to be caused by chemical exposure, but this is not known for sure. After the Persian Gulf War, there was a slightly higher incidence of Goldenhar (also known as Oculoauicular Dysplasia) in babies born to veterans, but government studies concluded that it was not possible to determine if the Gulf War was responsible. The condition has a low rate of heredity.
Characteristics of Goldenhar
These characteristics may occur as part of Goldenhar syndrome,which affects mostly males. Usually only one side of the face is affected:
- Malformation of the mouth
- Underdeveloped facial muscles
- Malformed ears, very tiny ears, or missing ears
- "Pits" or skin tags
- Problems with the tongue or lack of saliva
- Hearing loss
- Fused neck bones
- Eye problems - growths on the eye,or no eye
- Cleft lip/palate
- Spinal vertebrae problems
- Additional problems with the heart or kidney
- Learning disability
Treatment of Goldenhar
Goldenhar syndrome can be treated through plastic surgery to fix the jaw, cheeks, and ears. Children with Goldenhar often need many surgeries. Specialized dental care may be needed. Hearing aids can be worn by people with Goldenhar. Those who have the syndrome generally have normal life spans.
Support for Goldenhar
There are support groups and discussion lists for people with Goldenhar syndrome internationally (Some of these listed groups may not exist anymore):
Support Groups
Canada:Goldenhar Syndrome Support Network9325 163 StreetEdmonton, AB T5P 2P4 Canada
Great Britain:Goldenhar Syndrome Family Support Group 9 Hartley Court Gardens Cranbrook Kent TN17 3QY
United States:Goldenhar Syndrome Research & Information Fund P.O. Box 61643 St. Petersburg, FL 33714
Goldenhar Parent Support Network3619 Chicago Ave. Minneapolis, MN 55407-2603
Discussion Lists
Yahoo Groups has one fairly active list on Goldenhar: http://groups.yahoo.com/group/goldenharsyndrome/. The page on Yahoo groups has a photograph of a young girl with Goldenhar.
