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Hi, my name is ellie_mae!

ellie_maeellie_mae Member Posts: 23 Connected
I have been reading the forum and decided to jump in. Hopefully to be a useful contributor.

Replies

  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    Hi @ellie_mae welcome to the community!

    Would you mind telling us a bit about yourself? :)
    Disability Gamechanger - 2019
  • ellie_maeellie_mae Member Posts: 23 Connected
    Er how long have you got lol.
    I was born with a condition called Amniotic Band Syndrome but it was never talked about and I was in my 40's before I identified what it was.
    I worked in social care for my local authority for 23 years, having 2 serious injuries in the course of this, leading to a chain of events which have seriously impacted my life and heath.
    I'm a bookworm and always have been, I'm pretty clued up on a lot of issues affecting people with both obvious and hidden disabilities as best friend has COPD and  my grandson has a chromosomal syndrome and autism.
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    Sorry I have not heard of Amniotic Band Syndrome before, could you tell me a bit more about it please
    Disability Gamechanger - 2019
  • ellie_maeellie_mae Member Posts: 23 Connected
    A lot of doctors haven't either.
    It is a condition where a baby's limbs become entangled in the fibrous fibres in the uterus. This stops the limbs or digits from forming as intended. I am very lucky as far as this syndrome goes because it only affected my left hand, however it is not a condition you can hide although my mother tried her damndest to, I wore a lot of mittens.
    It can be incredibly destructive to a fetus, I am aware of cases where all 4 limbs have been massively affected.
    I had all my 3 children in my 20's and spent each pregnancy terrified as to whether my baby would be affected, of course none of them were because it is a toss of the dice condition as I now know but in the 50's no one knew why I was born as I was of course. My mother's retelling of the birth scenario has caused a lot of issues in my life, she rejected me at birth and openly told me so. Not a great start for a kid is it. Times were very different then 
  • Ami2301Ami2301 Community Co-Production Group Posts: 7,764 Disability Gamechanger
    That's awful, I'm so sorry about what happened at the start.

    Thank you for explaining to me :)


    Disability Gamechanger - 2019
  • ellie_maeellie_mae Member Posts: 23 Connected
    Thank you, as I say almost I lifetime away and in the autumn of my life I am peaceful and content if with a lot of health issues lol, so it's all good now
    Thank you for your support 
  • Pippa_AlumniPippa_Alumni Scope alumni Posts: 5,851 Disability Gamechanger
    Hi @ellie_mae, and a warm welcome to the community!

    What are you reading at the moment, anything good? :)
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