I'll be the first to admit it, I am a chronic Google-er. If I have symptoms of a common cold, before even thinking to call an advice nurse or even just compare symptoms with a sick coworker who more than likely passed me the illness in the first place, I will first Google everything and convince myself I am dieing of cancer. My mother had promised me the minute I found out about my daughter's syndrome she would first break ground on the Google-verse to see if there was anything that was going to devastate me. This prevented me from Googling MGDA until we were out of the parking structure, but the very core of my being refused to let me get away with ignoring it for long.
It's a blessing in its own way. If you google Morning Glory Disc Anomaly, you get a wikipedia article, a link to the Children's Hospital in LA, and a whole bunch of abstracts. I know what an abstract is, I see abstract and I immediately think "Here is a dumbed down version of an article that you would have no chance in hell of understanding, for your convenience, of course." I hardly even bother when I read the word abstract anymore after being thoroughly lost three words into the first one. So much for me understanding. For right now, I know MGDA is an issue with her retina and how it is attached to her optic nerve. When looking at her retina, the ophthalmologist saw what resembled a morning glory. From what I understand, IE what the almighty Wikipedia has told me and what a family optometrist said, MGDA is incredibly rare, something like one in every one to three million people in America. If you go to the March of Dimes website, it isn't even listed under congenital eye defects. Despite the rarity of it, the morning glory is distinct enough a specialized pediatric ophthalmologist who may have not even seen a case before was able to recognize it off the bat. Despite how rare the specific type of optic nerve anomaly is, optic nerve damage itself is much more common. This just falls into a much more specific category of optic nerve damage. I keep comparing it to a chromosomal disorder, there are more chromosomal disorders than a person can count, though many seem to manifest themselves in similar fashions to the untrained eye. I still don't quite understand what makes MGDA so unique from all the rest, except that is might be a little prettier to look at when under the close eye of a specialist.
At least the name sounds pretty..
Hi in my many searches over the years to learn more about Morning Glory optic nerve. It was interesting to read your post. My son was diagnosed with this at age 3 months and we were told at that time he was extremely rare. So rare in fact that I could not even find anything on the Internet or in medical journals. The doctors really couldn't even tell us much except that we learn as he grows what the extent of his vision is and that their is no surgery or cure for it. Now today after learning my cousins baby has eye problems I decided to search about my son. And was surprised that the most of the symptoms they associate with this he never experienced.
ReplyDeleteThank you for your post, sometimes it's nice to know you are not the only one.
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My daughter was diagnosed with Morning Glory optic nerve in one eye when she was around 2 years old. She is now 15, and it has never caused her any problems. She has almost no sight in her left eye, but thankfully her right eye is fine, and with corrective glasses or contacts, she sees fine, looks fine, is active in sports, and does well in school. I just wanted to post this to tell you that, hopefully, you have nothing big to worry about. Sometimes all you see on the internet is bad news, so I wanted to share some good news.
ReplyDeleteI understand that this condition can sometimes be associated with more serious problems, but generally only if it affects both eyes. (I think).
Best wishes to you all.
I'm a 38 year old male and I have MGDA in my right eye (undiagnosed until 17). I had balance and vision problems from an early age, but nothing that couldn't be corrected with glasses. However at 17 I was playing floor hockey and I received a high stick to that eye. My retina detached and I have lived with the pain of a scleral buckle for 21 years. Make sure you let your daughter know to protect that side of her head always!!!!
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