Hi all I’m Paul. I was born in the UK in 1971 with abs affecting my hands and feet badly, after many surgeries through out my childhood I never seemed to be told the full story by my family.
Earlier this year I decided to find out more and started a Google search looking at hand and feet defects from birth and stumbled across amniotic band syndrome and wow what a massive slap around the face it was I was discovering a huge network of people out there in the world I never knew. As a child growing in the UK in a mainly rural area I always was the odd one out and believed I was the only one, but this gave me strength. I’ve never quit anything in life, maybe I did things differently but I always got there in the end.
Now I have found out more about abs and now I am an admin for the abs Facebook group I am humbled to be a part of the ABS network and love to chat swap stories and help other people and families who are going through similar trials I went through. Reading some of the stories makes me smile, cry and laugh. I personally believe I have come out of hiding and started to fly for the first time in my life thank you for reading my little story
Paul
Hi, I too have ABS. I am64 years old and found this site about five years ago. Like u I thought WOW, at last I have an answer. I have spoke to Drs. over the years and even last year I spoke with my daughters pediatrician as I was about to become a grandmother. I thought she should be updated, she told me ‘she didn’t know, and that there is still so much they don’t know.’ Her lack of knowledge flawed me a bit that she didn’t consider it could be ABS.
On a personal note, I was born in 1950 into a small mining village in England at a time when there was stigma attached to anything that was different.
I have three children, non have ABS, I was concerned because I did not know if my condition was hereditary.
For my husband and children knowing that I now know the condition has a name, means little to them. For me it is huge. I carried a lot of guilt over the years, thinking somehow I was to blame. My parents too carried guilt, I know that so all in all not a healthy environment to grow up in.
Best wishes,
Lynne
lynne there is a facebook group called amniotic band syndrome (abs) also would love to meet up as I’m only in north Lincolnshire