If we become concerned about you or anyone else while using one of our services, we will act in line with our safeguarding policy and procedures. This may involve sharing this information with relevant authorities to ensure we comply with our policies and legal obligations.
Find out how to let us know if you're concerned about another member's safety.
Find out how to let us know if you're concerned about another member's safety.
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
Complete our feedback form and tell us how we can make the community better.