Hi, my name is ellie_mae!
Options
ellie_mae
Community member Posts: 23 Connected
I have been reading the forum and decided to jump in. Hopefully to be a useful contributor.
Comments
-
Disability Gamechanger - 2019
-
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. -
Sorry I have not heard of Amniotic Band Syndrome before, could you tell me a bit more about it pleaseDisability Gamechanger - 2019
-
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 -
That's awful, I'm so sorry about what happened at the start.
Thank you for explaining to me
Disability Gamechanger - 2019 -
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 -
Hi @ellie_mae, and a warm welcome to the community!
What are you reading at the moment, anything good?
Brightness
Categories
- All Categories
- 13K Start here and say hello!
- 6.6K Coffee lounge
- 104 Games lounge
- 416 Cost of living
- 4.3K Disability rights and campaigning
- 1.9K Research and opportunities
- 199 Community updates
- 9.3K Talk about your situation
- 2.1K Children, parents, and families
- 1.6K Work and employment
- 776 Education
- 1.7K Housing and independent living
- 1.4K Aids, adaptations, and equipment
- 615 Dating, sex, and relationships
- 363 Exercise and accessible facilities
- 737 Transport and travel
- 31.5K Talk about money
- 4.3K Benefits and financial support
- 5.2K Employment and Support Allowance (ESA)
- 17.1K PIP, DLA, and AA
- 4.9K Universal Credit (UC)
- 6.3K Talk about your impairment
- 1.8K Cerebral palsy
- 868 Chronic pain and pain management
- 180 Physical and neurological impairments
- 1.1K Autism and neurodiversity
- 1.2K Mental health and wellbeing
- 319 Sensory impairments
- 824 Rare, invisible, and undiagnosed conditions