r/DuaneSyndrome

Our beautiful baby was diagnosed with Duane’s Retraction syndrome (Type 1) at 6 months old. Having read through some of the posts on here and knowing how tough growing up can be, I really want to help her feel confident and beautiful, because she really is!

My husband suggested putting her in dance or martial arts classes when she’s a bit older, which I thought was a great idea as these aid in coordination through senses other than sight. I am sure we will have many conversations over the years about body image and standing up to bullies etc.

I thought it would be helpful to hear from other people who have it, what advice would you give to us to help build confidence and not feel self conscious about herself? Is there anything your parents did really helped or made things worse.

Like they say, you don’t know what you don’t know! Thank you all ♥️

Hi everyone. My 9 mo daughter was just diagnosed with Duane syndrome affecting her left eye. She is an identical twin, and her twin sister does not appear to have it.

She has only a minor head turn, and we were told that the way she compensates is very good for her vision. We’re still waiting for the full encounter notes so I can understand her specific type and measurements better.

I think I’m struggling more emotionally with the diagnosis than anything else right now. I keep wondering how one identical twin can have this while the other doesn’t. I know it’s a sporadic mutation most of the time but still. 😭

I’m also nervous about the future as they grow up together. They’re identical girls, and I know people are inevitably going to compare them. I don’t ever want twin A to feel like there is something “wrong” with her because her sister’s eyes move differently, or become self conscious about her eye or the way she holds her head.

For those of you who have Duane syndrome, or parents of children with it: What was childhood actually like? Did you/your child become self conscious about it? Were other people able to notice it? Did the head turn or eye alignment change as you got older? Did it affect vision, sports, school, driving, or everyday life?

And if anyone has experience with Duane syndrome occurring in only one identical twin, I would especially love to hear from you.

I’m very new to all of this and would really appreciate hearing what life with Duane syndrome looks like beyond the medical descriptions.