I have had several people inquire on my vision disability. It is something I am very open to talking about. Let me just begin by saying I have never considered myself disabled. There are things I am not able to do but I have never been able to do them, so I know no different. One of those being driving. I took my drivers tests and passed but never felt comfortable enough to do it. About a year after Arkansas gave me my license I was told that I should not be driving. to drive you have to see 20?70 or better and my best vision corrected is 20/80. I will admit that at times this is not easy and can be very frustrating for both myself and my family, but we make due.
So here is what I know about my condition. It is hereditary and I share it with my 2 older brothers and my son. It is different in every person and ranges in severity. One member of my family is legally blind, one has has very little issue and can drive and function normally, and I'm smack in the middle. I an not legally blind, but I can not drive.
At a very early age I was seen at the Arkansas School for the Blind and diagnosed with having Coloboma. It has taken me many years to peace together exactly what it is. The way I understand is that it is a condition that effects the center of the face. It is the same gene that cause cleft pallet. It is where a part of the eye does not completely form. It is literally a whole in my eye. The severity depends on the size and placement of this whole.
Since technology and medicine and improved so much in recent we are learning about this condition. For 23 years I was told I had this. I was told that it was on my Optic nerve and that my center line of vision was greatly impaired. I tend to look to the side to read. My distance vision is greatly affected and I wear corrective lenses to help. It wasn't until I moved ot Texas that I found out I actually have a different form of this defect. At an annual eye exam with a new doctor, pictures were taken of the inside of my eye. This was the first time this had every been done and what we learned shed a great deal of light on what was going on. This doctor determined that I didn't not have a Coloboma. What I had was called Macular Hypoplasia. It is basically the same thing but it affects my Macula instead of my Optic Nerve. This didn't really change anything as far as what I could see or what could done, it just gave me better understanding.
In addition to the under developed Macula, I have a condition called Nystagmus. This is totally seperate and just as rare. By looking at me you can not tell I have macular hyplasia but you can tell I have the Nystagmus. It is a phsical back an forth movement of my eye. I don't see it becaue my brains adjusts but when looking at me, it is obvious. There are times when I'm really tired or sick that I can see objects moving back and forth but that is rare. I honestly don't know much more about this condition.
There is no treatment for either condition. I manage it with glasses and patience. I am happy to say that things have improved greatly and my Son should have an easier time dealing with this than I did. He has a Coloboma in both eyes and we won't know the extent of the damage until he gets older and can tell us what he sees. One doctor has classified him legally blind, the other said hes not. We do know that he is color blind. He sees primary colors but can't see shades. I am encouraged by the amount of help he getting from his school and I know that he will excels regardless of his vision.
Thank you all for you care and support. If you have any more questions you can ask. If I don't have an answer, I will find it. I love learning about all of this. Both of these conditions are pretty rare but if you want to find more information just google it. Wiki has a brief description but I'm sure there are other sites out there.
Have a grea dat! I'm getting ready to write a few more blogs. One on "25 random pictures" and one on Jordan's Pinewood Derby so look for those soon!
"There is no treatment for either condition. I manage it with glasses and patience. "
ReplyDeleteThat is probably the very best thing that you can do. It has to be tough sometimes (I know with my bad vision, I get frustrated when I don't have glasses on and I can't see). Like you said, when you don't know different it isn't too bad.
It is interesting to see all the new developments that medical research comes up with. You're a very strong person and I'm glad I didn't offend you when I asked about your vision. That is awesome that Jordan's school helps him out with his vision. He seems like such a smart kid and I know he'll go far. Besides, most guys can't tell you what color magenta is anyway :D
Thank you so much for writing this blog. That is amazing. I have very poor vision I need a 10+ prescription. They do not have any way to correct this like they do some far sightedness or near sightedness with lasek. However, I feel blessed to live in a time where doctors know what they do about eye and vision health.
ReplyDeleteI hope you don't mind if I ask how the condition effects driving. I can't drive without glasses or corrective lenses.
It is amazing that you have a wonderful blog so people can not only get to know you, but relate over something like eyesight.
Thank you for sharing.
Wow Carrie! That is totally facinating. Thanks for sharing this with us. As far as vision test go, Ben (my littlest) goes to an opthomologist twice a year to get his vision checked and they are able to tell me wether he can see out of both eyes equally or not (which he can currently) and aprox. how good or bad his vision is (I think it's .75 right now in both eyes, before it was lopsided).
ReplyDeleteHe was born with ptosis which was basically an eyelid didn't open all the way due to a muscle that didn't work. He had surgery at 3 months, but the doctor was concerned because you have to learn how to see, and he was worried his eye would just fail to learn. Doing good so far...
Thanks for the comments. If my blog helps one person then it is successful!
ReplyDeleteHow my vision affects driving is this, Even with glasses my vision is at its best 20/80. In order to get a license and pass a vision test at the DMV you have to see 20/70 or better. My prescription is -5.5 so its not incredibly strong but going stronger wouldn't help.
Jordan does not wear glasses at this time. We tried them for about a year but didn't do anything to help him so we are just not worrying about it right now.
I encourage you to find a doctor who has heard of the rare conditions. Most doctors told me that they had never heard of it and that should have been my clue to walk about. My doctor now is amazing and I'm sure will both J and I!
I was told that I have coloboma when I was a kid. my parents didn't treat me any different than my other sibs. they are all fine and have beautiful eyes. my coloboma is in my left eye and I am totaly blind in that eye. my right eye has always done the job of both.
ReplyDeleteI have performed my daily duties just fine as I still had one eye to count on. now that I am 51 my right eye gets strained, I was a secretary until 8 months ago when I failed to do the things that I used to do. (computer work, filing) I have started to see starbursts in my right eye when I read or watch tv more than 15-20 min. I have been getting headaches more and I spend more time just sleeping to rest my eyes. I went to the social security office to apply for disability and they told me that since one eye was still good I should just suck it up and work.
people need to come out of the closet with this disorder. maybe if more people with it would just come forward and tell their stories the medical field would do more to educate others. thanks for letting me vent.