Septo Optic Dysplasia / Optic Nerve Hypoplasia

Septo Optic Dysplasia, A personal perspective from childhood through adulthood as explained by Lisa. Presented by The MAGIC Foundation for Children's Growth.

Category:

Nonprofits & Activism

Tags:

• Septo Optic Dysplasia
• optic nerve hypoplasia
• panhypopituitarism
• hormone imbalance
• growth hormone deficiency
• The MAGIC Foundation
• support

[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

[reidrules45]

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

[christinopher65]

The is NOT a disease.

[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.