Amniotic Band Syndrome ~ So little Information

Amniotic band syndrome affects 1 in 1,200 live births. And it is said to cause  178 in 10,000 miscarriages. And over half will involve the hands, fingers and club foot.  But if you begin to try and dig deeper and find out more  about Amniotic Band Syndrome there is nothing.  We don’t know how many people effected with ABS go on to College and have families.  We don’t know much of anything except for the hard facts.

This breaks my heart to know that there are so many people out there in the world that are effect by Amniotic Band Syndrome and there is really no where to turn.  No support system.  No community of people.  Nothing like that.

It is time to make a change.  It is time to make the world aware of Amniotic Band Syndrome but more importantly it is time to give these Moms, Dads, Families and Friends a place to go to get support.  So that they no longer feel alone  in the world.  WE are not alone.  We are many.. Many more then you would ever imagine.

Comments

  1. [...] This post was mentioned on Twitter by Tricia, lilhandbigheart. lilhandbigheart said: Have you heard? Amniotic Band Syndrome ~ So little Information http://littlehandbigheart.com/amniotic-band-syndromeso-little-information/ [...]

  2. I love how the Internet can be used to bring together people in such meaningful ways. I love that you’re spreading the word and bringing people together.

  3. admin says:

    Susan,

    Thank you so much for the wonderful comment. We are so passionate about making people aware of Amniotic Band Syndrome but more importantly about making the kids comfortable with themselves and letting the kids know they are not alone out there.

    Tricia

  4. vicki says:

    Hi

    Im also mum to a child with ABS and feel so isolated that there are no support groups in my hometown or any back up etc from proffesional’s ,seems nobody shows any intrest in parents or the childs well being xx

  5. Tlale Zembe says:

    I am a mother of a son with ABS. I only became aware of this issues when my son was born. I do not know what support to give my son when he comes back sad from school because the way kids treat him at . He say that kids don’t want to play with him because of his hand. It breaks my heart that he has to go throuhg this at the age of six.

  6. Shannon Sanchez says:

    Hello! I am married and a mom of a 19 year old son and a 15 year old son who were NOT born with ABS, but I have a little hand and have ABS. I made a comment on the picture of Haylee’s little paw that introduces who I am and how my little hand looks. As I see it, ABS can basically do what it wants to any body part or limb. I just recently found out that my “condition” actually had a NAME!! For my whole life (I’m 42) I’ve never known there was a name and had only met one other person who had a Special Paw (as my husband and sons call it). I know how mean kids can be. It’s a fact. I know that usually they don’t make the comments to actually be MEAN, but they haven’t been taught by their parents as to how to handle anyone who is different from themselves.

    My husband and sons love my little paw and hold my left hand as often as they hold my right hand. Sometimes during church (and one or the other of my son’s get a little distracted) they think it’s kind of funny to draw little smiley faces on my nubs. Yeah… silly teenagers!

    To the moms out there with kids dealing with this…. it gets better with age. Both the kids with little hands, AND their peers/classmates. Usually by the time high school rolls around, most of the ugly comments and hurtful words are gone. Just stay strong and brave and stick with the friends who respect you for being different :) If there is anything I can ever do to help or any support that is needed… just shout and I’m here :)