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Conditions

Goldenhar Syndrome

Goldenhar Syndrome is a congenital condition that usually affects just one side of the sufferer’s body. Common characteristics include facial and ear abnormalities, breathing problems, deafness, heart, lung, kidney and eye health issues, feeding problems and spinal and rib abnormalities. Each person with Goldenhar Syndrome is affected differently, so will have a different mix of the symptoms. The condition does not affect the intelligence or lifespan of the sufferer and 70% of suffers are male. The cause is not currently known. There are various surgical procedures available, depending on the symptoms of the sufferer.

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My baby girl was born 5 weeks ago with her right ear missing and small right mandible, they have suspected she has goldenhar syndrome,we are seeing the genetics doctor next month to get a diagnosis. If it is goldenhar,I have so many questions to ask about my baby's future.any adults out there that can tell me about their life or their children's life living with goldenhar syndrome.





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Our daughter is now nearly 9 and has goldenhar. Her was born with both ears and has nearly normal hearing. One of her eyes is slightly deformed but agian, her eyesight is in normal range. She has had one reconstructive operation, when she was 10 months old, and has been fitted with special braces. She will need further treatment to her jaw, but for that we have been advised to wait until the bone and teeth develop further. She lives a fairly normal live, she is ok at school, plays the recorder(partly as it helps her with her swallowing issues) and enjoys sport, though she has some muscle and back issues. In most ways she is a normal, health child. That she looks different is clear, but she has made friends and is generally happy. Living with Goldenhar has its issues, and we have been lucky, but it is possible to have a fairly normal life too. A doctor has offered us the chance to meet another person with the condition, we have not yet done so, but we are curious how they see life. I hope this is useful

Hello I was born with goldenhar now I am 52yrs old ,there wasn't any options for me in 1964 , I had dislocated hips which I had operation 's to rectified my hips , my right ear missing but only had one operation which was unsuccessful ,my right side affect my jaw .my eye I can only see shadows , half a vertebra missing form my spine , right thumb , my skin on my right side forehead is slightly different . But I had a good supportive mother who never gave up on me .my lung was affected due to being premature 6mths , but I have grown up healthly happy and gained confidence , I have never let it stop me doing anything .I work for a living and married with two healthly children with no problems I do look after myself and go to the gym to keep fit .. Good luck to all

Since I was a baby I have suffered with abnormally large ears and this has really knocked my self confidence over the past few years, hardly anyone has ever seen me with my hair tied up because I am embarrassed, I'm wondering if I can get surgery to pin my ears back and will it be done under the NHS..I am 16 ?





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I am a female, nearly 30 years old & was diagnosed with Goldenhar Syndrome as a child. After cosmetic surgeries in my early 20's I thought everything was fine. However, in recent years I have since been diagnosed with hypermobile joints, leading to Labrum tears in both my right hip & shoulder, both of which need surgery. Both my hip & shoulder show bony abnormalities. My parents have always been concerned I have joint problems relating to Goldenhar, but no GP yet knows of this condition, or even who I would need to be referred to for further tests. I have attempted to research this myself, but found little or no research in relation to goldenhar and joint problems or Goldenhar syndrome in Adults. Does anyone else with confirmed Goldenhar syndrome suffer from joint problems?





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I have a lot of problems with my knees hips and shoulders to, there currently investigating it thing I might have arthritis.

Hello, I have been suffering more and more with joint pain and am just hitting my 30's I am also being investigated for arthritis. So I'm thinking it might be related to goldenhar.

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I am 47 and was born with goldenhar syndrome and have had some surgeries to the face. I have recently found out thst I have ten white non specific lesion's on my brain. Is this linked with the syndrome. Anyone out there with goldenhar that has the same?





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I have been diagnosed with haemachromatosis wich is too much iron in blood so have too have up to 400mls blood taken weekly so thought that was causing problem but finally after checking symptoms and reading comments I thank all you for your comments





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At the age of 65, I self-diagnosed this syndrome, after realizing I had some of the symptoms. Deafness and slight deformation of right ear, one kidney missing, deformed thumb on right hand. At 40 I underwent a Heller Myotomy as a cure for Achalasia, which worked for the next 25 years. Sadly the symptoms of Achalasia have now returned and I am undergoing BTX injections as a temporary cure. I wonder if there could be a link between the two conditions, i.e. some deformation of the stomach which would cause the Achalasia?





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I have this condition, im now 28 and have two sons ones 5yrs and one 6mhs. I have one ear, which as a young girl I had reconstructive surgery thay unfortunately failed, I have a kidney at the front of my body and twisted to the side, I also have scilliousis of the spine and I am a survivor. :)





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Hello,it's nice to read your story, can I ask why did the surgery fail? My baby girl was born 5 weeks ago with suspected goldehar syndrome,she has no right ear. Is the scilliousis a symptom of goldenhar? Xx

Hi my surgery failed due to it not being well done back when I was young. Medical science has come along way since I was young. I had reconstruction of my ear which was used from parts of my body. It's horrible and I hate it but it is what it is and bow I'm older I don't care so much. I do wish I had the plastic ear rather than the reconstruction now. But can not change the past 😕

😀😀i can so relate! I also had rib cartilage used but because my parents ran out of money & moved countries i ended up with half finished surgeries. I don't like the end result but learned to live with it.

My brother is 15 and has a gldenhar syndrome. When he was born doctors said he wouldn't live for long but he is a fighter! He had many ops through out the years and the worst part was that his boody refused anastetics so he was clinicaly dead twice. Starting with his throught when he was just few months old to enable him to breath, basicaly he cud have died durring the op or during sleep, then many years of jaw distraction. Its been painful and scary but now he finally had one of his last ops (fillers in his cheeks) and he is looking great! It hasn't been easy but he is happy There is always hope!





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i have noticable vains on both of my ears more on the right.sometimes during the winter when am sitting next to a central heater my ears gets so red that they disappear for a while...apart from that the veins are always there like some spider home or lightning hehe..i know its not funny...its very annoying...am only in my 30's and i had that since i was young...could it be some bad blood needs sucked out or what...get me a vampire or please help





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Over the past month I have been suffering from a fuzzy head, and have been getting what I can only describe as a prickly heat feeling in my chest. The feeling is coming from inside my chest. I've been feeling very tired, fall asleep everytime I sit down.





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