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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. 32 People

    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 18-21 2 Responses Feb 7, 2013

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    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 16-17 1 Response Aug 30, 2012

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    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 18-21 3 Responses Feb 5, 2012

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    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 18-21 4 Responses Feb 24, 2011

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    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 26-30 3 Responses May 9, 2012

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    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 36-40 Oct 25, 2012

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    Grandma

    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 46-50 1 Response Oct 7, 2011

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    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

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    Related Experiences

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    I am born and raised in a family that under no circumstances can understand or accept anyone's need of the kind of life(style) i consider to be my only way to have a meaningful...
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    Some of my friends on here have asked me if anything has happened with Nikki so I'm just going to tell you that no nothing else has happened. We still talk and text a little and it...
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    "This is who I am, and I am willing to die for it". - Will Smith No, I am not talking about becoming a terrorist. But I am on a journey of faith. I have discovered that I am not...
    ItisonlyI ItisonlyI 26-30, M 1 hr ago

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    In some of my other experiences you might have heard i have a brother. I used to have two brothers, but something terrible happend. It started like this: One day me and my family...
    Gavin788 Gavin788 13-15, M 1 hr ago

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    i'm a 19 year old female,I never really noticed until I heard the voice massages I send on whatsapp to my friends.idk who I get it from,my sisters,& my mom don't have deep voices.
    lifelesspie lifelesspie 18-21, F 1 hr ago

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    I was diagnosed with Hashimoto's in my 20s. I get blood tests twice a year and an ultrasound on thyroid once a year. About 2 years ago the ultrasound showed something like a small...
    amazingdream amazingdream 46-50, F 2 hrs ago

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    I missed the important deadline and now I am stressed like I haven't been in a really long time. I couldn't sleep last night. As soon as I lied down I started to feel very sick. My...
    OpenlyHonestly OpenlyHonestly 22-25, F 1 Response 2 hrs ago

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    Septumgauger Septumgauger 36-40, M 2 hrs ago

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    Coconut00 Coconut00 26-30, M 3 hrs ago

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    I am the youngest in our small family of 4. The oldest memory that I have is my mom and my drunk dad fighting. My dad has been a drunkard all through his life. He never really...
    caughtinthemiddle1 caughtinthemiddle1 22-25, F 4 hrs ago

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    I'm UK size 2 and I have to buy all my shoes from the children's section. This is good because children's shoes are exempt from sales tax and therefore cheaper, but it limits my...
    LizzieLost LizzieLost 18-21, F 4 hrs ago

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    One of many greatest possible home companies for you to startwith is really a " Plugin Profit Site ." This short article will take a short look at these on the web buiness...
    angoracheck53 angoracheck53 41-45, F 5 hrs ago

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    Whether you or your loved one is experiencing the normal decrease in mobility occurring with the passing of time, or deals with an illness-related absence of physical agility, a...
    angoracheck53 angoracheck53 41-45, F 5 hrs ago

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    I'm wondering if anyone has had the same weird experience as me. Recently when i leave the house, I have these brief moments like blackouts for a few seconds (at least thats what...
    auroraskyy auroraskyy 18-21, F 2 Responses 5 hrs ago

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    I have had a favorite fragrance: "Héritage" (Guerlain) for the past 20 years.. a woody fragrance. It is almost impossible to get a hold of this perfume nowadays. I tried "l...
    marcdorsan marcdorsan 41-45, M 5 hrs ago

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    I think the only reason I'm on here right now is because I've never talked about this out loud to anyone, and being in this type of family dynamic is isolating. I only have to...
    Summer26061997 Summer26061997 18-21, F 5 hrs ago

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    I came to depend on a sporadic PM with an EP member who was seriously listening and helping me with my issues as an OW. Very sweet and kind person. I'm hoping I haven't offended...
    LotusLIL LotusLIL 46-50, F 5 hrs ago

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    I think one of the more depressing things I put up with at this point in my life would have to be listening to all these other people around my age - and even years younger - who...
    Jugemu Jugemu 31-35, M 1 Response 5 hrs ago

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    Last week when returning home from the pub I was groped in the bus. I felt terrified, insecure and good, all at the same time. I was not too drunk but I was tired as I had been...
    coldboy coldboy 26-30 1 Response 5 hrs ago

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    I can control my dreams and have architect control over the setting plots and people. but only when I know I'm dreaming
    monkeyl1v3r monkeyl1v3r 36-40, M 6 hrs ago

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    i have killed 2 peepsi cleared a room and have seen brains and the open body of a subject lol but i liked it
    cpltew cpltew 31-35 6 hrs ago

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    Soon I will be starting my last year in highschool and even after these years I am still getting those bad feelings about it.. I had this dream last night that everybody was making...
    TrueRedRose96 TrueRedRose96 18-21 1 Response 7 hrs ago

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    I never knew what it felt like til I lost my precious baby almost a year ago. It still hurts me today. Time doesn't heal all. A parent should NEVER have to bury a child. I find...
    Photogirl685 Photogirl685 26-30, F 7 hrs ago

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    I have some regrets but its because of what I been through. I just want to live it up :)
    BrownBeeCa BrownBeeCa 26-30, F 7 hrs ago

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    SoberingBabySteps SoberingBabySteps 31-35, M 7 hrs ago

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    I had the same recurring dream for many years as a child. I haven't had it now for quite a while but I have been thinking about it a lot. In my dream, I am in my mom's car in a...
    audhumla audhumla 22-25, F 7 hrs ago

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    Did anyone else's self esteem just hit rock bottom when you found out you have herpes? Mine is currently and I just can't seem to pick myself up.
    pandapirate20 pandapirate20 18-21, F 8 hrs ago

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    Every year I get a new calendar with beautiful photos. It almost always takes me several months before noticing I have not turned the month. Like it is in December and the calendar...
    katsuobushi katsuobushi 36-40, M 2 Responses Jul 30

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    I missed out on high school and some of college due to an illness so I feel a bit behind socially. I try to make plans with the few friends that I gave but they can take days to...
    deleted deleted 26-30 1 Response Jul 30

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    My life has just fallen apart, I've lost everything & everyone that I love I have no friends, I get bullied everyday, my family doesn't care.... I just don't wanna be here...
    parso19 parso19 18-21, M Jul 30

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