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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. 31 People

    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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    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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    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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    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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    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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    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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    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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    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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    Related Experiences

    I have spent most of my life by myself. I never really had much for fiends. There are very few people i keep in regular contact with only 3/4 if you count my brother who lives with...
    whatisi whatisi 26-30, M 14 hrs ago

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    If you're miserable like me and is also bitter and angry I suggest you fix yourself before you use this site. It's not like I'm being offensive here but I've spent to much time...
    Concerto Concerto 22-25, F 1 Response 13 hrs ago

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    How to get a adult diagnosis for ASD (Asperger's Syndrome) ... Do your homework .. It's a complex subject . Talk to those who have been diagnosed . The internet is a good place to...
    interlink2 interlink2 46-50, M 6 hrs ago

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    I have, within the last 2 months, developed hyperthyroidism due to my amiodarone medication for irregular heart rate which I have been on for 3 years. In these 3 years, my heart...
    Rob3P Rob3P 46-50, M 6 hrs ago

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    So, there is this girl who I've met like a month ago. At first, I didn't get very interested in her because I was very high and I didn't pay too much attention to the girl. Then...
    juanig juanig 18-21, M 1 hr ago

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    So, there is this girl who I've met like a month ago. At first, I didn't get very interested in her because I was very high and I didn't pay too much attention to the girl. Then...
    juanig juanig 18-21, M 38 mins ago

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    It all goes back to my childhood, I loved my mom and dad with all my heart but yet never received love back from them . The only person to ever love me as much , if not more , as...
    imperfectbeauty imperfectbeauty 18-21, F 1 Response 18 hrs ago

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    My husband and I have been married for almost 5 years. The whole time even when we dated has been full of abusive ways. I am so lost by the fact that he doesn't exactly...
    Anyonehome Anyonehome 26-30, F 18 hrs ago

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    Sometimes I cannot stop fantasizing about killing people who have offended my senses of justice and respect for basic human dignity. Today I had such an experience: there's this...
    sadconfused707 sadconfused707 41-45, M 17 hrs ago

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    If you do drugs don't have a kid. If you are having sex with various people don't have a kid. Therefor if you are mentally or physically unstable Don't Have A Kid.
    burnedmemories burnedmemories 16-17, F 1 Response 17 hrs ago

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    I think I might have it actually I'm not 100% sure Since July my beautiful silky usually greasy hair has become very dry and brittle and my scalp is very dry and flaky. I've been...
    kelbel95 kelbel95 18-21, F 2 Responses 14 hrs ago

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    I have synesthesia and I love it. Nearly always. Since I can remember I've been thinking in colors. Associating each word, letter, phrase with different colors. People/cities...
    vaiuba vaiuba 26-30, F 14 hrs ago

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    I am allowed nothing. We have school holidays now I have to get up every morning at 6 and go to bed at 9. I have to help doing all things in the house with my mother and when I am...
    noflowersforyou noflowersforyou 13-15, F 3 Responses 14 hrs ago

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    In 2008 my 3 year old Nephew Chaince died from strangulation from a mini blind cord. He died a week after Christmas, in some ways I am lucky to have known and lost many people in...
    davidmuhn davidmuhn 46-50, M 14 hrs ago

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    It is horribly lonely. We have been together 18 years and been to therapy many times. Each time he has not told the entire story. He is diagnosed with depression. Sex is gone...
    mabon1 mabon1 56-60, F 9 hrs ago

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    Reading back through my previous posts, I cannot believe how stupid I was for allowing myself to stay miserable for so long. I was in a relationship that made me lonely and...
    lulublue2222 lulublue2222 26-30, F 9 hrs ago

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    when i was younger i didnt have the best life. I lost everyone that i loved, i seen people die, i seen someone commit suicide. My father was never there, i dont even know him. My...
    Nikkii1995 Nikkii1995 18-21, F 1 Response 9 hrs ago

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    so the friends that i do have are sooooo werid!!!! they have started a religion based on one of the other friends. i have been converted? or so they say... werid :O
    MaddiJade16 MaddiJade16 13-15, F 8 hrs ago

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    I love people who have piercings and tattoos. It's so attractive to me. They always have the best stories, know how to have the best time, and are just generally better to around.
    nursingstudentxo nursingstudentxo 22-25, F 6 hrs ago

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    His name is Snickers. The image I attached is of him. He is my baby <3 I love him. I planned getting him for months and actually ended up getting him on my 19th birthday this...
    GiftedChoctaw GiftedChoctaw 18-21, F 6 hrs ago

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    I'm supposed to go visit my parents today and stay there for a few days. But I'm feeling really nervous. I'm curled up in a ball inside a crawl space at home and don't want to move...
    SimiRayea SimiRayea 22-25, F 2 Responses 5 hrs ago

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    Why did she have to be the one who was taken from our family and not me? I have asked this question numerous times and to date have no compelling answer. She was the one who ran...
    fiery47 fiery47 61-65, M 1 Response 4 hrs ago

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    Hello all I have dermatomyositis. About 12 years ago it started. Before that I was ok, except I had Raynauds from a teenager, I thought it strange but never went to a doctor with...
    gabrielsgirl gabrielsgirl 61-65, F 3 hrs ago

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    In grade 11, my French teacher left in November on maternity leave and we got a new teacher as her replacement. At first I didn't really like my new teacher, but after a few weeks...
    littlegreycells24 littlegreycells24 16-17, F 2 hrs ago

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    I would say I'm decently attractive, and have actually had couple of opportunities to have girlfriends, and everytime it's about to happen I shut them out. I honestly tell it is...
    Miguelthemustang Miguelthemustang 18-21, M 1 Response 18 hrs ago

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    The girl can stay, but i don't want you here I said the day Shoeblack apperared in the house bringing a girl with him. She has nowhere to stay and I told her you will take care of...
    redribbonbook redribbonbook 46-50 17 hrs ago

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    I'm kyah and I'm 14 years of age I have distal arthrogryposis type 1 I have had 8 operations so far and more to come I just wanted to see if I can related to anyone :)
    kyah05 kyah05 13-15, F 14 hrs ago

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    Hey I'm kyah and I'm 14 years old I was diagnosed with distal arthrogryposis type 1 I have had some pretty rough patches I have 12 scars and 8 operations so far I just wanted to...
    kyah05 kyah05 13-15, F 14 hrs ago

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    Here's a real SHOCKER for some of the younger members of EP: Almost ALL of us were "accidents"! That doesn't mean that most of us were unwanted, merely unplanned! Trust me. Wait...
    Beaver318 Beaver318 41-45, M 13 hrs ago

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    I have PASH (palpable: 1.5x0.8x1.7cm), my pathology report noted: "benign breast parenchyma with fibrocystic changes including columnar cell change, pseudoangiomatous stromal...
    km2214 km2214 26-30, F 10 hrs ago

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    Being my age and being a virgin doesn't bother me as much, since I need my first time to mean something in terms of commitment. Maybe that's why I haven't ever kissed a woman/girl...
    jdhammer84 jdhammer84 26-30, M 9 hrs ago

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    Me. I shouldn't have kids. My upbringing left me walking the streets and getting into trouble, all types of dudes trying to get a piece of this *** since puberty hit. My kid...
    adianoeta adianoeta 26-30, F 7 hrs ago

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    Ever have that friend who would do anything to protect you from harm or pain. A friend that would do anything to save you. But it just so happens to be one of the opposite gender...
    dreamforever789 dreamforever789 18-21, F 7 hrs ago

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    Her mother, past con artist turned highly conservative pseudo christian fruitcake, recently started beating my friend which resulted in her leaving to go live with her dad who is a...
    DataDiver DataDiver 16-17, F 6 hrs ago

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    although they say I have lots of defects with language and speaking, i have been told its because of asperger's syndrome i am really good in maths physics and other subjects that...
    daniel147 daniel147 13-15, M 1 Response 5 hrs ago

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    I have an accent when I speak French. People seem to feel the need to point out the fact that I'm not a native speaker.. I'm fluent & you understand me.. No need to remind me I...
    maktub1 maktub1 26-30, F 3 hrs ago

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    I see myself as a loving person, Im easy to talk to and im always there for my friends and family even when they dont do the same with me, I also have a habit on taking on everyone...
    gsue gsue 36-40, F 1 Response 2 hrs ago

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    I think i may have anxiety. I try telling my mum why i cry most nights and why I hide from people. I try to tell her what's bothering me but it ends out to be an argument...
    Froz3nInTime Froz3nInTime 13-15, F 1 hr ago

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    My singing has gotten me laid. Not a lot cause I'm still kinda shy from my growing phase as a singer, but I do sing to myself when I'm alone. . . or at least when I think I am. I...
    phenom0086 phenom0086 26-30, M 1 hr ago

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    I have a accent when people point it out. I have a southern accent
    maddieboo16 maddieboo16 16-17, F 1 Response 55 mins ago