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Have anyone heard of the deformity called golden har syndrome? My daughter has it and we are going to UAB genetics for testing. It is a genetic disorder with a broad range of problems, so I would like to hear from someone who has it.

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My brother have golden har syndrome, since he was ten. He has had fainting spells accompanied by censures. He is 22 now, and the only thing I know of that may be the reason he has this is from the Agent Orange that got in my fathers blood in Vietnam, and was passed to him. He has been through many tests, and they still don’t know what is causing the fainting spells.
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my son has golden har, iwas told it just happens,myson has no other problems but facial which will be worked throuht surgeries.he has no left ear and a small jaw
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My older brother was born with the disorder and all my life I just understood he had birth defects. It wasn't until this year that I learned that those defects had a name. It hasn't affected our family in any negative way that I can see. He is now married with 2 awesome children. In childhood, I remember he had multiple surgeries to correct the facial deformities. He wears a hearing aid, and can see out of one eye. He looks asymmetrical but it helped him shed immaturity earlier in adolesance. The multiple trips away from home to have the surgeries was taxing on him, so he opted not to continue just for the sake of "looking pretty" He was stubborn and wanted to just go on with life. My parents respected that decision and he feels good about it. In our family helping people has always been stressed and no one made a big deal about how he looked. We adapt to the situation and everyone can say he is one of the most awesome people they know. Good luck!
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HI, I am 40 years old and was diagnosed with Golden Har around the age of 8. I was born with a skin tab on my left ear and a growth on my left eye. These two defects are one of the first signs of Golden Har. I don't have any severe facial deformities my defects are inside the body. My C-spine area (neck) bones are fused and some underdeveloped. My appendix is in the wrong place and my left eye has no muscle to move it left. Now that I have reached that terrific age of 40 I am experiencing more pain from the neck area, I have been clumsily falling and my hands are tingly and numb often. I have yet to find a Doctor that knows Golden Har and from what I understand they still have not found what causes it. I have 2 children and thank God they do not have any health issues. I have read that identical twins have been born- 1 w/ Golden Har and 1 w/o. They have the same genes & cromosones. So it is still a mystery. If you find someone doing research please let me know as I would like to participate. Thank you, Shirley McDevitt
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My daughter has Golden-har. The doctor that examined her says that it is an extremely mild case. She is 8 and a perfectly normal (but cuter and more charismatic) girl full of life and happiness. She has dermoids in both eyes, but can see out of both with glasses correction and is very slightly tongue tied, but copes with it fine. We are currently facing a change in medical insurance company only to be told that we cannot insure my daughter. Can anyone shed some light on insurance and how they have been able to get medically insured please?
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hey, iam 16 and i have goldenhar syndrome. i am just going into college :-) i finished school with great difficulty but with the right help i got ther. My goldenhar is quite noticeable i have 30% ear loss in my left ear, one eye lower than the other on my left side,my spin is slightly Curved and my jaw doesent open as much on my left side. Goldenhar has only affected my left side. i was born with one ear smaller than the other but when i got older i got that sorted out. i have been told by mum that the cause may have something to do with a chemical my dad breathed in, but we dont know for sure.

If there is any questions feel free to ask....i want to help others :-)
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Hi,

I have a friend in his 20's who has this syndrome and I would like to help him but I don't know how to without sounding patronising and offending him. He is desperate to find love but finds that people don't give him a chance purely because of his facial dissfigurement, and has only had a handfull of very short term relationhips. Are there any support groups anywhere that might be able to help? I'm extreemly worried about his lack of confidence and drive and am worried that he might resort to extreem measures.

Please help x
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There are quite a few websites about Goldenhar Syndrome. It was first described by Dr. Maurice Goldenhar in 1952. I am having a very hard time finding any medical professional who know much about it. Most doctors tend to blame symptoms on something else - I belive out of ignorance. I have severe neck and back pain and no one can find anything to do to help me. I noticed some others on this site also have necka nd back pain -- which I am guessing is due to the malforned vertebrae that go along wiht Goldenhar -- but, again, no seems to know what to do about it. I had a ct scan done and they said, yep, you have some malformed vertebrae - see ya............. no help at all.

They say it is usually not hereditary, but my son also has it, as did my father. I found the name of a Dr. who had the most information I have seen to this point, her name is Holly Ann Ishmael of the Gale Inst. But, I cannot find her - but have asked my Dr. to help locate her.

I think there is a lot more to this syndrome besides the disfiguring - I would like to know more and be studied - be a guinea pig, so that maybe I can help my son avoid the type of pain that I endure on a daily basis.

I am willing to give my personal e-mail out if anyone responds to this, as a lot of these dates are old............. I need help and I know others do too. I have even tried contacting The Doctors TV Show - but they have not responded - my guess is that they don't know anything and can't find anything.......... Perhaps if enough of us e-mailed them they would put a show together. I have tried Dr. Phil as well - again, no response - but if we all try, maybe............

I had plastic surgery on one ear as a child. I have a crooked smile and sort of weird shaped jaw line. But mostly I have a tremendous amount of chronic pain that no one knows how to treat and it is close to unbearable. My son has the same smile and his ears don't match but he is cute as a button and no one seems to notice yet - he is only 9. I do not want him to suffer as I have.

There is power in numbers - we need to make a plan and get some help!

My name is Cindy
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Hi my name is Alex my daughter was also born with goldenhar she is 5 years old and she gets lots of stairs from people especially by children and kids say some rude comments how do i handle that situation so it wont affect her in the future mentally i feel terrible when she asks me why do they stair so much, it brakes my heart i dont no what to answer to that in the correct way .How did you handle that? and did you?
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My now 20-year-old son was diagnosed with Goldenhar Syndrome in 1988. He is mildly affected I have been told. He has a 7th nerve facial palsy, one soft tissue orbit slightly smaller, and one ear is different in configuration and hangs lower. He also had a dermoid cyst over the right eye (affected side) which was removed at age one. At the time of his infancy we had testing for hearing at Montifiore in NY, Neurological testing at Albert Einstein. We finally landed in the very capable hands of Dr. Joseph McCarthy of NYU and his associate Dr. Barry Grayson also of NYU. He had a Frankel device at age 8 to keep his teeth from shifting midline. He had rhinoplasty at age 16 because he was having difficulty breathing during allergy season because of his very deformed septum. We have not done any cosmetic surgery for his ear or eye. He is very handsome, and it takes a very close inspection to see that something is not quite right. He is wildly intelligent. We worked very hard at building his self confidence and he is unaffected by his facial asymmetry. I realize that there are varying degrees of affliction. We are most lucky.
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My husband has golden har, amongst other disorders and I love him very much. He is handsome and perfect in every way. DON'T Worry, your friend will find the love of his life soon enough. :)
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neck and My daughter was born with goldenhar syndrome in 1980 & unfortunately died at the age of 2yrs. At the time I was involved with a group of people whom had all experienced Goldenhar Syndrome with there children.We were going to take the drug company to court because we believed that the drug Debendox or Thalidamide could have caused these deformaties! She only had one normal ear she also had skin tags and a mass of white tissue on her left eye.Like others she was to have sorgery on the ear and eye but died of a respiratory infection.Im using a friends computer to send this msg,my name is Annette  ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

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I am 13 years old I was born with Golden Har Only in my face though. Only one side of my Jaw gros I have had a jaw extraction at the age of 1 it was unsuccessful. I can see out of both eyes and hear out of both ears the only problems I have is Ear infections more often then normal people the dr.s have told me they can take fake bone and Evan my jaw out so my mouth isn't crucid but I like the way I am! (: :) 
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i know this is a late response, BUT my son has golden har. He is 3 and we have only heard it 2xs in his whole like. From my experiance and knowledge it is a child born with facial deformities and some children also organ deformities. My son was born with skin tags and he was only born with one kidney. I am assuming that is why they referred to him as golden har. There is nothing wrong with his brain. At one point we had a appt. with genetics but they signed us off as my son being "normal".
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