I Have Septo-optic Dysplasia

A Septo-optic Dysplasia anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Septo-optic Dysplasia. You're not alone. 16 People

    Running Low On Hope....

    I am a mother of a 2 month old who, luckily, got diagnosed before we ever left the hospital. We spent a couple of weeks in the NICU and then a week at home and then another week to get on DDAVP, levoxyl, and cortef. I know he can see me when I am very close to his face and he...
    ProudMommy416 ProudMommy416
    26-30, F
    3 Responses Jun 21, 2011

    My Experience With Septo-optic Dysplasia

    I am a seventeen year-old girl, and I am normal in almost every sense of the word. I am currently in my senior year of high school. I work hard at school every day, and I am currently working on applying to colleges. I play the clarinet in the band, and I love it. There is one...
    RLM94 RLM94
    16-17, F
    4 Responses Oct 2, 2011

    Finally A Name!

    Ever since I was a young girl I knew I was somehow "different" from other people. As a toddler i would bang my head on the floor in fits of rage, have uncontrollable mood swings, could not see well,difficulty understanding the world and how to do certain things like tie shoes...
    grettagrids grettagrids
    36-40, F
    Apr 13, 2013

    Ava Bug

    I am a mother of a 2 1/2 year old with severe septo optic dysplasia.  I am desparately needing resources. People. stories. answers. HOPE.  Just like the disease... these things are very limited... and limiting.  I PRAY someone out there see's this... maybe even...
    bugmom bugmom
    22-25
    4 Responses Jun 22, 2010

    My Life So Far With Septo-Optic Dysplasia

    I am an 18 year old student almost in my senior year, living in Cape Town and one of five people in South Africa who has Septo-optic dysplasia. I recently discovered this. My parents had kept this from me in order to protect me and allow me to lead my life without having a sword...
    2525calvin 2525calvin
    18-21, M
    8 Responses Sep 17, 2013

    My Daughter Has Septo Optic Dysplasia, 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
    Feb 5, 2012

    Living Life With Septo-optic Dysplasia

    I am twenty-one, going on twenty two in three months, I live in Alberta, Canada and I volunteer a lot. My story is a long one and I don't know where to begin. I was born with Septo-Optic Dysplasia, I'm not sure when exactly I was diagnosed, and I wasn't told what it was...
    ChrisCrunchie21 ChrisCrunchie21
    22-25, F
    3 Responses Oct 5, 2013

    I'm 29 and I was diagnosed with SOD

    when I was five. I'm blind in my right eye and just a bit near-sighted in my left and I have Growth Hormone deficiency. All this meant to me growing up was that I wore glasses, was short, got out of school once every 3 months to go see my specialist and I had to take a shot a...
    dorkqueen23 dorkqueen23
    26-30, F
    1 Response Mar 11, 2015
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