Our group consists of over 470
people* somehow touched by a series of birth defects, sometimes called
Goldenhar Syndrome is a congenital
condition that presents itself in many different birth defects. Not all are
present in each case and there are many varying degrees of severity.
Some related conditions include:
Auriculo Vertebral Spectrum (OAV
- Hemi-Facial Microsomia (HFM),
- Goldenhar-Gorlin Syndrome and
and Second Bronchial Arch Syndrome.
But that alone tells you nothing.
Goldenhar Syndrome can affect
almost any area of the body, but is mostly centered on the facial and
skeletal areas. In its mildest case a child's face may only be slightly
asymmetrical and their ears malformed. In the most severe of cases a child
may have to be tube fed, on a respirator and have some brain damage.
We live with Goldenhar Syndrome and
it's related conditions everyday, never meeting
anyone in person with the same thing. This syndrome occurs in 1 in 3500 -
5000 children and yet it is virtually unheard of. Please help us tell the
world about this syndrome and help us to get our message out to those
affected people who haven't heard about us already. Thank you, if for
nothing more than taking the time to read this.
If you would like to find out more
about Goldenhar Syndrome, after reading through all the various information
contained in this website, you can contact our founder Barb Miles or our
Group Moderator Sandi at:
Goldenhar Syndrome Support Network
9325 163 Street
T5R 2P4 Canada
The Goldenhar Syndrome Support
members as of September 1, 2005