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To Worry About Duane's Syndrome?

4 replies

DimpleHands · 29/04/2016 19:35

My DD, 5 months old, has just been diagnosed with Duane's syndrome in her left eye. It means she can't turn her left eye to the left - it will only look to the right or straight ahead. She turns her head to the left to compensate, giving her the appearance of a squint. There's no cure and no treatment available and I'm a bit upset about it. Does anyone else have it/have any children with it and if so can you let me know about your experience?

OP posts:
MattDillonsPants · 30/04/2016 01:22

How stressful for you Dimple. It's always really worrying when something's "wrong" with our children so you will be feeling anxious about it.

I found this video...it's a young woman in her 20s who has Duane Syndrome and she speaks very eloquently about her experience.

She is beautiful by the way and talks about how she has compensated for it...she says she was never teased in school but other kids would sometimes ask her about it....what was it etc.

As she's grown she's learned to disguise it to a large extent. xxx

MattDillonsPants · 30/04/2016 01:23

Also, I wouldn;t be at all surprised if in the future, this has treatment available...the way medicine is advancing now...you might think that they will soon be able to fix it.

MattDillonsPants · 30/04/2016 01:26

Also there seems to be some treatment available in Boston CHildren's Hospital

www.childrenshospital.org/news-and-events/2012/february-2012/a-simpler-surgery-for-a-complex-condition

GinAndColonic · 30/04/2016 01:58

I will PM you

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