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Disaboom » Health » Spina Bifida » Spina Bifida: Explaining it to uneducated people

Spina Bifida: Explaining it to uneducated people

Last post Wed, Jun 25 2008 3:39 PM by Finetooner. 18 replies.


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  • madmumbler madmumbler
    Posts: 239
    • permalink Re: Spina Bifida: Explaining it...

    • Posted: Fri, Apr 11 2008 5:35 PM

    • My son is 12 (SB), uses a w/c, VA shunt, ACE procedure, caths. My "short version" is that spina bifida one of the most common congenital birth defects and it's similar to a spinal cord injury.

      That suffices for most people. 

      My "pet peeve" is when I see a person w/SB described in media as "suffers from SB" or "has the illness SB." That makes me want to strangle someone. My son isn't "suffering" and he's not sick. (Heck, the kid can run a 15k in his racer and I can't even WALK a 5k! *LOL*)


    • Lesli in SWFL.
      Mom to Joey, aka "The Boo" (12, w/c athlete with spina bifida)
    • Reply Contact
  • Amanda Amanda
    Posts: 7
    • permalink Re: Spina Bifida: Explaining it...

    • Posted: Wed, May 28 2008 2:01 AM

    • i have spina bifida and i tend to "dumb it down" for people who don't know what i'm talking about. usually i say i have a problem with my spine and that is what makes me walk different from you. this especially helps to explain it to curious little kids. or if i'm in my wheel chair i'll say, "well i get tired a lot more easier then you do so that is why i need to use this." or if they see my braces or crutches i'll just say i need to use them because they help me walk better. i hope that helps :)


    • Amanda
    • Reply Contact
  • sherilynnandawnasmom sherilynnandawnasmom
    Posts: 9
    • permalink Re: Spina Bifida: Explaining it...

    • Posted: Wed, Jun 25 2008 4:12 AM

    •  THANK YOU I feel the same way. People only learn through education and its not like most people surf the web and say I wonder what SB is and then go research it. It isnt until they are face with someone like us that they look at it and go what the #$@# is that. I grew up in the eighties for crying out load I have seen some seriosly narrow minded people as im sure we all have. I would honestly rather someone cameup and just asked (even rudely) than just assume because im in a w/c im braindead. sorry if i offend anyone this topic like most rile me up. I tend to be a very blunt and non sugar coated type of person. thanx for letting me rant


    • kimi
    • Reply Contact
  • Finetooner Finetooner
    Posts: 32
    • permalink Re: Spina Bifida: Explaining it...

    • Posted: Wed, Jun 25 2008 3:39 PM

    • People are just naturally curious.......like me.  I'd be asking because I want info on the condition and you've got it.  Just addressing two of the 3 big "E's"......Enlighten, Educate.


    • Reply Contact
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