I’m 26 and I have SOD. My husband is 29 and also has SOD. We are both totally blind and autistic. The SOD is what caused the blindness and autism. My SOD also caused me to have no sense of smell, and have problems regulating my body temperature and stuff. There is no cure for SOD. I personally don’t want a cure because it really doesn’t get in my way of living a happy life. You have to look past that kind of stuff.
Excellent description! My 3-year-old daughter has SOD and developed Chiari Malformation at one year of age. She had zero visual acuity (no light perception), DI and severe bilateral ONH at birth. After decompression, her vision is quickly becoming sometimes somewhat normal, often pretty good! We are currently weaning her off of her DDAVP because she has never gone up on her dose and her endo thinks her hormones may have righted themselves. It's been a journey! Thank you for posting this!
I have this condition and got out pretty lucky. I have 70/20 vision with glasses and schizencephaly in my left parietal lobe. My right limbs are an inch smaller than my left side, and I have mild scoliosis. Luckily, I have no endocrine issues and have average intelligence. I'm currently at university. One of the hardest parts, honestly, is trying to figure out what is normal and what is not. For instance, I recently learned that I have mirror movements. When I snap the fingers on my left hand, my right hand twitches. I showed it to my siblings, and they said that wasn't normal, so I showed it to my neurologist. It can be hard to question if what you are seeing, feeling, or doing is normal or not - even if the experience is benign. I wish I knew at least one person with the condition, so I could compare experiences - it would feel less lonely.
HI, I have this. I have started loosing vision last year. I am almost 48 1/2 and I'm legally blind and no eye dr will tell me WHY, or they won't say I don't know. I'm so tired of going to dr, dr, dr... so I'm giving up!
I’m 26 and I have SOD. My husband is 29 and also has SOD. We are both totally blind and autistic. The SOD is what caused the blindness and autism. My SOD also caused me to have no sense of smell, and have problems regulating my body temperature and stuff. There is no cure for SOD. I personally don’t want a cure because it really doesn’t get in my way of living a happy life. You have to look past that kind of stuff.
Excellent description! My 3-year-old daughter has SOD and developed Chiari Malformation at one year of age. She had zero visual acuity (no light perception), DI and severe bilateral ONH at birth. After decompression, her vision is quickly becoming sometimes somewhat normal, often pretty good! We are currently weaning her off of her DDAVP because she has never gone up on her dose and her endo thinks her hormones may have righted themselves. It's been a journey! Thank you for posting this!
Brilliant description 👌🏽
My daughter is in emergency as I watch this . What a nightmare I hope no one ever has to see there child going threw this .
So when can a Doctor tell what percentage a baby can see
I have this condition and got out pretty lucky. I have 70/20 vision with glasses and schizencephaly in my left parietal lobe. My right limbs are an inch smaller than my left side, and I have mild scoliosis. Luckily, I have no endocrine issues and have average intelligence. I'm currently at university. One of the hardest parts, honestly, is trying to figure out what is normal and what is not. For instance, I recently learned that I have mirror movements. When I snap the fingers on my left hand, my right hand twitches. I showed it to my siblings, and they said that wasn't normal, so I showed it to my neurologist. It can be hard to question if what you are seeing, feeling, or doing is normal or not - even if the experience is benign. I wish I knew at least one person with the condition, so I could compare experiences - it would feel less lonely.
that was really good. could you please make more simplified videos? thanks
HI, I have this. I have started loosing vision last year. I am almost 48 1/2 and I'm legally blind and no eye dr will tell me WHY, or they won't say I don't know. I'm so tired of going to dr, dr, dr... so I'm giving up!
I'm an adult with SOD!
I have SOD is when you’re membrain doesent exist that’s what my dad told me
My friend baby was born with this. He is 100% blind. And very developmental delay.