Morning Glory Syndrome- Getting Information

Posted by cnjfuller on 4/17/2012 at 2:33 PM

Hello all,

My daughter, now 2 years old, was diagnosed with MGS when she was 20 months old. We do not know yet how much her vision is affected exactly, but we do know it is very poor and she lacks depth perception. As I'm sure anyone else who's been affected by MGS knows, information on this has been very limited- I've also found it's pretty much cited word for word among all resources. Anyway, I was trying to find out all I can- and I do mean ALL I can- and was hoping that maybe as a group we can find other similarities that don't stop at a diagnosis. My daughter, Amy, also has a cataract in her affected eye. Has anyone else experienced this? Also, it is still a mystery in the medical community as to why this happens. I have read that one theory is gestational thyroid problems. Mommas, have you had any thyroid disorders? One reason why this specifically is so important to me is prior to pregnancy, I've had to be checked annually for thyroid problems. It is quite prevalant in my mother's family. Also, if a problem with myself could be a cause of concern for my children's vision, I do have worries about becoming pregnant again. Alright, anything?

There are currently 2 replies

Re: Morning Glory Syndrome- Getting Information

Hello, I am the program manager for another AFB web site specifically designed for parents who have children with visual impairments. We have a variety of ways for you to connect with other parents including social networking in the Family Friends area and by message boards designated for specific eye conditions. I believe Morning Glory Syndrome results in coloboma to the eye and so I would recommend posting to that message board. Here is the link http://www.familyconnect.org/message_board_subject... . The home page of FamilyConnect is www.familyconnect.org .

good luck. Scott

Re: Morning Glory Syndrome- Getting Information

Hi everyone, I hope you have notice that with your lack of sight from morning glory syndrome your hearing is great. Have you noticed you centre your good eye to the middle of your face. the lense of my bad eye has slipped down & have a cataract. I go to my optomotrist every year. He wrote a paper on it, you might want to google My eye has turned blue. T