I Have Schizencephaly

A Schizencephaly anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Schizencephaly. You're not alone. 34 People

    So Much Uncertainity

    I'm 33 years old and just learning I was born with Schizencephaly.  Now with learning this, all the signs and symptoms that started back when I was about 12 or 13 make sense now... I was told they were panic attacks and anxiety right up until 2 years ago when I had a MRI...
    groovygirl75 groovygirl75
    31-35, F
    9 Responses Oct 23, 2009


    I am a 47 year old mom of 4 from Hampton Virginia who is awaiting the arrival of my first grandchild that is due November 23rd.  A few weeks ago we were told that the baby had a stroke in utero and that she would need further testing.  On October 5th we traveled to Philadelphia...
    Kazziexo Kazziexo
    1 Response Oct 7, 2011

    My Daughter Has Schizencephaly.

    hi , were from the uk.my daughter is 17months of age and was diagnosed with hemiplegia just after her first birthday. we got her mri results back last month which show she has schizencephaly on the left side of her brain. the cleft it from the front to the side.i am new to all...
    chelseab chelseab
    4 Responses Feb 24, 2011

    My Life Saver

    i found out i was pregnant when i was 15 then through testing the doctors ran test on my tummy and baby and told me my baby boy had schizencephaly ,i froze. i am now 26 with a ten year old son who i was told would never walk ... and he does ! , well at three . he has never talked...
    dariansmom dariansmom
    3 Responses May 9, 2012

    First Canine Reported To Have Open Lipped Schizencephaly - Cletus' Story

    I am the proud owner of Cletus the Bloodhound, a 2 year old Bloodhound mix who has the first reported case of open lipped schizencephaly in a canine. I adopted Cletus when he was only 8 weeks old and I have to say it was not I who chose him, it was my other dog, Magnum, who I...
    dsilber dsilber
    Oct 25, 2012

    Kiyanah Marie

    My daughter was born with an extremely rare condition called Schizencephaly which is classified as a developmental delay, it took us almost a year for her to be diagnosed because she had no physical abnormalities, once an mri was finally taken we found the answer that we were...
    kiitee13 kiitee13
    2 Responses Feb 7, 2013

    I Have Schizencephaly

    I was diagnosed with both schizencephaly and cerebral palsey when I was five. I had been having difficulties walking and doing other things my entire life, just about. We went to so many doctors appointments that I feel like I spent most of my childhood in a doctors office. I had...
    Meig Meig
    1 Response Aug 30, 2012

    My 10 Month Old Has Septo Optic Dysplasia And Schizencephaly And Is Blind.

    Hi I am 20 years old and I am in the US Army. My 10 month old daughter has septo optic dysplasia and schizencephaly.Consequently she is also legally blind. It came as shock since the drs at first told me i was crazy and that she was fine. Me being her mother I new something was...
    zionsmomm zionsmomm
    3 Responses Feb 5, 2012
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