Septo Optic Dysplasia / Optic Nerve Hypoplasia

[ChattyChelby]

My name is Chelby, I also have Septo Optic Dysplasia. I have most of the same simptoms as she does. Luckily, my parents also raised me to be independant. as a teen I have faced, and will face, many challenges being legally blind. However, I feel that my purpose is to spread the word that just because I have SOD, and other people have SOD (or other eye conditions), we can still do basically EVERYTHING a sighted person can do, we may have to do those things a little differently, but we can do them

[christinopher65]

The is NOT a disease.

[reidrules45]

@christinopher65 You're right, but you're wrong. It ISN'T a disease, but it is a disorder.

[blackeyedpeasalbum]

i have septo optic nerve dysplasia im 14 nd i do everything normally i have some depth problems but honestly i think im lucky bc when i was born the doctors thought i was blind nd i didnt know SOD cld b alot worse than mine i didnt know about the growth hormones or anything i have never had to take medication or anything like that i had 1 surgery when i was 6 nths old but other than that nn out of the ordinary .........GOD BLESS OTHERS WITH WORSE CASES THAN MINE

[djjay7777]

I have optic nerve hypoplasia and well I hate it cuz there are so many things in life I cannot do :( I am 19 and I study electronics and I find it hard not being able to see small things and solder melat but hey hope one day there will be a cure

[djjay7777]

I have optic nerve hypoplasia and well I hate it cuz there are so many things in life I cannot do :P I am 19 and I study electronics and I find it hard not being able to see small things and solder melat but hey hope one day there will be a cure

[sammie9536]

My niece was just diagnosed with this disease, she's only five years old. This is a very helpful video : )

[kaliekisses]

I am 24 years old and have Optic Nerve Hypoplasia

[blacksheepgirl]

CNT from BSG: I have recently in the last few years found 3 people who have septo optic dysplasia and it sure is great that 1 has talked to me about it on and off. :) I'm not bitter just frustrated because there's still so much I don't know, or that I wish I could know. Also saw a website with a person with septo optic dysplasia who has hands just like mine. That was neat to see. My fingers are crooked kinda.. I don't know how to explain it. I'm very blessed. Any support groups around? Thx

BSG

[blacksheepgirl]

part 3 from BSG cnt. Also recently I've been having worse vision on and off and yes I guess I'm frustrated because when I try to talk to someone about it they say oh everyone gets that, or whatever. I don't have a support group and sometimes I get very frustrated. I have no vision in my left eye and my mom actually thought I could see light in my left eye until about um... 5 years ago, or maybe a bit more. I was shocked cuz I never have. I think ppl should be supportive and I wish there CNTnext.

[blacksheepgirl]

..cnting.enough info out there for adults with septo optic dysplasia and sadly my optic nerve in my left eye was looked at around 2001, or so and it was said that it has withered away. I guess I won't get a chance for that eye. I am frustrated too because my parents didn't know how it would affect somone and sometimes I was made to feel bad about myself. I love my parents and my probs were quite a challange for them with my being on shots and cortisone and in the hosp and and stuff. CNT..

[poopie0110]

i have septo optic dysplasia and i have everything she talked about

[PoppyWebb]

i have panhypopitairsm

[MakeUpYourMindGirl1]

Well explained. Me and this lady have a lot in common, i also have sod im 27 now and have been off growth hormone for 10 years, however i am very regretful of my decision to come off it, it totally balances everything out and i am eager to go back on it. SOD is very rare, 1 in 50, 000 and so growing p with it is very difficult but as this girl describes, being raised to be independent does help... If anyone has any more info for me or if you would like to ask me anything please get in touch

[tnwar330]

it's a shame that it's so hard for people with pituitary disorders to get growth hormone. Insurance will cover viagra, but they won't cover a life saving medication like growth hormone.