I was born with GHS in 1971, but was not diagnosed until nine years later. I was born with a dermoid tumor on my right eye, ear tags on my right ear and a cats eye in my right eye. I had surgery to remove my dermoid when I was 9 years old.
My 14 year old son is the one with goldenhar syndrome. He's had 2 reconstructive surgeries to make him an ear. He's got to have pallet repair then when he's 18 he will have jaw surgery.
my daughter with her twin brother was in born 2014. She was diagnosed within days of her birth. She is a incredible fighter and has a contagious smile that lights up a room.
4 people with Goldenhar Syndrome have taken the SF36 survey. Mean of Goldenhar Syndrome is 1986 points (55 %). Total score ranges from 0 to 3,600 being 0 the worst and 3,600 the best. Take the SF36 Survey
