FAQ - goldenhar syndrome
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Goldenhar syndrome????

I was wondering if anyone knows anything about Goldenhar syndrome????

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 Oculoauricular 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. Goldenhar syndrome is a disorder that affects the face and ears and usually requires surgery. Goldenhar has symptoms such as malformed or missing ears, and hearing loss. It is variant of Hemifacial Microsomia. The severity of Goldenhar Syndrome can vary and the effects can be unilateral or bilateral. The physical manifestations of Goldenhar Syndrome match those of Hemifacial Microsomia with the addition of epibulbar dermoids which are benign tumours located just inside the opening of the eye or the eyeballs. The physical characteristics of Goldenhar Syndrome include - Unilateral or Bilateral underdevelopment of the Mandible. Unilateral or Bilateral Microtia. Unilateral or Bilateral reduction in size and flattening of the Maxilla (upper jaw). Narrowing of the opening of the eye. Epibulbar Dermoids which can cause problems with vision. The lack of growth and facial asymmetry of Hemifacial Microsomia are accompanied by epibulbar dermoids, which are explained above.
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Hope this helps
matador 89  (+ info)

Does anyone here have Goldenhar Syndrome?

I was born with Goldenhar Syndrome and I was wondering if anyone here has it too.

Hello, I was born with a very mild case of Goldenhar Syndrome, so mild it goes unnoticed, only my family and people very close to me meaning people that see me in a daily basis notices.

I used to noticed more in pictures when I was a child, I have the left part of my jaw less developed than the right side, same for my left side of my rib cage, those are the two signs I have of the syndrome.

I have never been actually diagnosed by a doctor, but was until recent that I have done my own research but according to what I have learned I am 99% sure that I was born with it.

I am now 37 years old, as I mentioned my case is mild enought that I never had any corrections, and now that I am 37 I doubt I will explore to correct the abnormalities in my jaw.

I am now mainly concern about my offspring, I will eventually get someone in genetics to give me feedback of what is the risk I would have of passing it on.

I hope you remain well, let me know about your case.

TTYL, Hector.  (+ info)

Can anyone tell me about GoldenHar Syndrome?

I'm asking this question because I was born with this Syndrome and I cannot find any sites that can define what it really is and what it does. Thank you all for answering.

Firstly, allow me to mention that, contrary to the statement by Wesley Y, above, the specialists do not believe it is the result of anything the mother did while she was pregnant.
Goldenhar Syndrome - also known as Oculoauricular Dysplasia or OAV - is a congenital birth defect which involves deformities of the face. It usually affects one side of the face only. Characteristics include - a partially formed or totally absent ear (microtia), the chin may be closer to the affected ear, one corner of the mouth may be higher than the other, benign growths of the eye a missing eye. Doctors are uncertain why Goldenhar occurs. Environmental factors may play a part and there does seem to be an increased incidence of Goldenhar among the children of Gulf War Veterans. In addition to the physical characteristics common to Goldenhar, your child may have the following problems - hearing problems, weakness in moving the side of the face that is smaller, dental problems - the soft palate may move to the unaffected side of the face, the tongue may be smaller on the affected side of the face, fusion of the bones of the neck. Depending on the severity of Goldenhar Syndrome, your child may have some or all of the following surgeries - lowering of the jaw on the affected side, lengthening of the lower jaw, 3 to 4 operations to rebuild the outer ear, addition of bone to build up the cheeks, soft tissue may need to be added to the face.


The information provided here should not be used during any medical emergency or for the diagnosis or treatment of any medical condition. A licensed physician should be consulted for diagnosis and treatment of any and all medical conditions.

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Support groups that you may wish to contact –
FACES: The National Craniofacial Association
P. O. Box 11082
Chattanooga, TN 37401
(800) 332-2373
email: [email protected]
(I believe some financial assistance is available for non-medical expenses like travelling to specialists etc.)

Goldenhar Syndrome Support Network
9325 163rd Street
Edmonton, Alberta, Canada T5P 2P4
Email: [email protected]
Web: http://www.goldenharsyndrome.org
Barb Miles, a parent of a child with Goldenhar Syndrome, created this support and information network.

Children's Craniofacial Association
P. O. Box 280297
Dallas, TX 75228
(800) 535-3643
Call and request a copy of Dr. Fearon's booklet on Hemifacial Microsomia/Goldenhar Syndrome.

Hemifacial Microsomia/Goldenhar Syndrome Family Support Network
c/o Kayci Rush
3619 Chicago Avenue
Minneapolis, MN 55407-2603
(612) 823-3529
This organization provides information packets for new parents and is an excellent resource.

National Parent to Parent Organization
c/o Julie Gordon
150 Custer Court
Green Bay, WI 54301-1243
Toll free (877) 336-5333
This organization helps you get in touch with parents
in your area whose children also have Goldenhar syndrome.

Children with Facial Difference: A Parent's Guide.
Written by Hope Charkins, MSW. Order from Amazon.com if you cannot find it in your local bookstore.
Excellent resource for parents to help them cope with medical, emotional, social, educational, legal, and financial challenges presented by facial differences of their children.

National Health Law Program
1101 14th Street, NW, Suite 405
Washington, DC 20005
(202) 289-7661
Website: http://www.healthlaw.org
Provides extensive information on health care law affecting families with children who have special health care needs.

Hope this helps
matador 89  (+ info)

I need some help for a little baby with GoldenHar's Syndrome?

Please go to the following website and sign my petition. A few weeks ago on TodayTonight there was a story that featured a little baby named Jacob who suffers from GoldenHar's Syndrome. His diabilities are numerous and his parents were denied a Carer's Payment as Jacob was deemed not disabled enough. You can read the story on the TodayTonight website. The petition is to lobby the government especially Cnetrelink to change the criteria to make it easier for parents with disabled children to access the Carer's Payment. Please send it to your friends and family too. The more signatures that we get the better. His parents have been denied a carer's payment 4 times. http://www.thepetitionsite.com/1/make-carers-payme%20nts-easier-to-access

Please help.

By signing this petition, there would be too many people who would abuse it. I would be more willing to donate money for the family to hire a lawyer to appeal the decision.  (+ info)

goldenhar syndrome info?

My daughter has some symptoms such as the colobomo on her eye and when she was born she had four skin tags which are removed now. Also she had severe heart defects. She has fused vertabra in her back. Other than the heart the symptoms are mild. Does this sound like goldenhar to anyone?

Goldenhar syndrome - AKA Oculo-Auriculo-Vertebral (OAV) syndrome, sometimes used interchangeably with Hemifacial Microsomia (although this definition is usually reserved for cases without internal organ/verterbrae disruption) - is a congentinal defect affecting between 1/3500 to 1/26000 live births in the UK.

Chief markers of Goldenhar syndrome are incomplete development of the ear, nose, soft palate, lip, and mandible on usually one side of the body. Additionally, there are often issues with internal organs, especially heart, kidneys, and lungs. Typically, the organ will either not be present on one side or will be underdeveloped. Note that whilst it is more usual for there to be problems on only one side, it has been known for defects to occur bilaterally (approximate inicidence 10% of confirmed GS cases).

Other problems can include scoliosis (twisting of the vertebrae), lipodermoids (fat in the eye), and hearing loss (see hearing loss with craniofacial syndromes).

Causes of Goldenhar Syndrome are unknown, although there is anecdotal evidence linking it to exposure to certain toxins (e.g. dioxin) before or during pregnancy. There is circumstantial evidence suggesting the incidence of GS is higher in children of gulf war veterans (see gulf war syndrome).

Treatment is usually confined to such surgical intervention as may be necessary to allow the child to develop normally (e.g. jaw transplants in cases where the patient would otherwise be unable to eat properly).

http://www.changingfaces.co.uk/  (+ info)

are there any goldenhar specialist doctors out there?

My brother has goldenhar syndrome and needs help and advice. Can anyone help? where do you go for management and support?

  (+ info)

What is the name of the syndrome that the person may appear to have facial characteristics of down's syndrome?

I previously watched a documentary about sufferers of a syndrome whose facial features appeared to be down's syndrome but it wasn't down's syndrome. The grow to be quite large adults and have special needs. Does anyone know the name of this condition?

Klinefelter syndrome  (+ info)

Are there different types of Down syndrome and what areas of the body does Down syndrome affect? ?

Also, are there any significant statistics related to Down syndrome? Has Down syndrome received any recent attention from the media? Are there any famous people that have Down syndrome.
Answer as many of the above questions as possible.

There are three types of Down syndrome, garden variety Trisomy 21, mosaicism and translocation.

Read more at:

Welcoming Babies with Down Syndrome (English, Spanish, French)

There is a slide show that also incorporates videos of the featured 'More Alike than Different' cast at the National Down Syndrome Congress website:


And great information at the National Down Syndrome Society website:
Down Syndrome Fact Sheet

You might also enjoy

Margaret's Guide to Down Syndrome

For bios of actors with Down syndrome, see:

Down Syndrome and the Acting Gene


DS in Arts and Media


Michael Johnson


Sujeet Desai

Down Syndrome Links at the Family Village website

Check out this recent New York Times article:

The DNA Age: Prenatal Test Puts Down Syndrome in Hard Focus

Have fun with your research!
  (+ info)

What is so bad about having down syndrome?

I think people are a lot colder than they want you to believe. Too many pregnancies prediagnosed with down syndrome are terminated! Doctors tell people that their kid will be like some animal and people believe them. I've met my share of people with down syndrome, and they all seem pretty human to me. On top of that, they were all decent folks, which is a lot more than I can say for the general population. And how does knowing that unborn children are purged because of down syndrome affect those who were born and have down syndrome?

WOW!! I'm so glad that there are other people who's lives have been touched as mine has. See when I was 28 I gave birth to twin girls and one of them was born with Mosaic down syndrome. Of course, I didn't know much about it til now....and yes I was shocked. They are 14 months old now, and such a blessing as well as my two boys. My daughter is about 4 months behind in her milestones, but she is always so happy! Out of all my kids she is the easiest to handle.

It's always nice to have other people, who see that they are more alike, then different from the rest of us.  (+ info)

What is the syndrome called when you cannot feel physical pain?

I remember watching a show a long time ago, and this one little girl was born with a syndrome where she could never feel pain. If she fell on the floor and cut her knee, she wouldn't cry, whereas most children would.

What is this called? Is it a syndrome? Is it a medical condition? I just want to know what it's called, and I can do the research on it.

It is for a story I am writing but I don't entirely know what it is.

It's called "congenital insensitivity to pain"  (+ info)

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