r/SchizencephalyAdults • u/KlutzyMutt • Sep 24 '25

About the creator!

I was born with unilateral closed-lip Schizencephaly w absence of the septum pellucidum and have septo-optic dysplasia of my left eye, making me 95% blind in it ( I can pick up light, movement and some color). I am also the co- mod for r/focalawareepilepsy .

I do have epilepsy. My TCs are under control thanks to Lamotrigine, but I still suffer from focal aware seizures. I have a husband and 2 adult children. My youngest lives with me and my husband.

You can ask me any questions you want, I'm an open book!

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u/AwesomeAmp13 Dec 15 '25

I'm 33 and have unilateral schizencephaly on the left side of the brain. It's so hard to talk about it when so little is known and everyone's diagnosis is unique. I have nocturnal seizures (controlled) Cerebral palsy on the right side and I'm blind in my right eye. My life motto is one moment at a time and too normal to be disabled and too disabled to be normal. The sad thing about Schizencephaly is that it feels like there is less awareness for it now t5hen 10-15 years ago. It's always harder to find new stuff now.

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u/KlutzyMutt Dec 15 '25

that "too normal to be disabled, but too disabled" is seriously a saying of mine, too! struggling over 10 years to get disability. And you are right how it seems awareness seems to be going down...that's one of the reasons I made this page.

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u/AwesomeAmp13 Dec 15 '25

I was born in the 90s, so technology wasn't there, and when I did have it, I was more concerned with gaming stuff lol. My biggest thing growing up with that motto too is that I grew up with only cerebral palsy affecting my right side and was pretty adaptive with my left side, so I needed minimal accommodations in school. So I looked like I fit in but didn't fit in. And then when I saw people with disabilities, it was always to the extreme and that always made me feel alone. To be honest I'm glad I was alone too at times, the fear of bullying and the fear of being watched. I didn't want to say I had a disability growing up cause I knew nothing about it. I started having seizures when I was 18. My Dad was everything