Spina Bifida Support Group

Spina bifida describes birth defects caused by an incomplete closure of one or more vertebral arches of the spine, resulting in malformations of the spinal cord. The spinal membranes and spinal cord may protrude through the absence of vertebral arches (called clefts).

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  • lovelystrength

    Get to know me :)

    I'm 15 and I have spina bifida, myelomeningocele. I am able to walk, but my biggest issue is my bowel incontinence. I got an ACE surgery due to it, but recently it hasn't been working well. I also have to use a catheter for my bladder. Ive had two back surgeries and one ACE surgery. It's hard for me to find teens my age who understand it, so if you are going through the same problems as me, I...
  • Gabbyforte811


    Hi, my name is Gabby, I am 15 and I have spina bifida and club feet. I can walk because I had surgery to correct my feet. My wish is to possibly find someone maybe my age that I could talk to and connect with. Right now, I don't know anyone who has what I have. Everyone I know are normal and they don't really understand. I just wanna share my feelings with someone who will understand.
  • natz1991


    Hello my name is Natalie I'm 30 weeks pregnant and they have told me my baby has spina bifida I'm just wondering what foods they baby can't and can have and if they can have cow and gate  formula and cows milk 
  • louiseff


    I dont have it, none of my kids have it. I was just, in the last 8 months, given the gift of awareness. My 26 yr old daughter married a man with two children. The youngest(4) has this. My new grand-baby, wets herself. The dad and MY daughter get upset when she does this. I need, HONEST, KIND, UNDERSTANDING, feedback! I am willing and wanting to learn! Please! be nice! I am, ignorant on this!  TY
  • sarahlouiseuk

    New here

    Hi. My name is Sarah and i am 31 years old. I was born with Spina Bifida Occulta and Scoliosis. I enjoy eating out, going to social clubs, going to bingo, listening to music, watching TV or films and using the internet.
  • deleted_user


    who is also Both incontinent
  • styfir8

    Protective play...

    Hi my name is Chris and I'm from Northern  Ireland...My daughter is 2.5 yrs old and was born with spina bifida myelomeningocele with hydrocephalus and chari 2 malformation.She has a firm of scoliosis kyphosis in which the middle of her spine, looking from the side, protrudes outward.This in my opinion needs to be protected when she is playing with her toys either in her bedroom or in the main...
  • xxGill21xx

    Spina bifida

    Hello, I was born with Spina bifida.
  • jelmerh

    Your personal stories

    Dear community, We are a group of students researching awareness for Bowel Issues for Spina Bifida patients; Our objective is to identify potential solutions to give those suffering from Spinal Bifida more freedom and ability to manage their lives. To our understanding, bowel problems are a common side effect for which often no adequate solution is found. It is a sensitive and very personal...
  • AGeere

    Leg Weakness

    has anyone been experiencing leg weakness to the point of falling more often? 
  • storm1485

    Hello to everyone

    Hi everyone,My name is josh, I'm 24 years old and born with spina bifida. I'm a faith believing christian and put my faith and love in Jesus Christ my Lord who gives me hope and salvation. I enjoy talking on skype and playing games with friends or anyone, working with computers and networks. I also run a garry’s mod server (physics sandbox game) I’m currently in college for IT and Cyber...
  • molly.storms


    my name is molly and i am an adult living with spina bifida my problems really are'nt that bad but i don't have good support system and I am feeling lost I have been working as a cashier for the last few years and it has become harder and harder for me but i can't quit because I need the insurance I have tryed to find other employment but have not found anything yet dose any one have any advice
  • Mrwizard8787

    Unlucky in love and friends

    I have a hard time finding a friend and relationship .....I'm 29 my name is Jon I live in Colorado springs ....I found a lady online and she tried to scam me out of money I fell for her till mom showed me she was in the UK and just wanted money .... I would like to find a group here to hang with and do things with ..... Do you know any one ........
  • Niccid


    Hi my name is Nicole. I have a new friend who has spina bifida. I myself have hydrocephalus and cerebral palsy. It is nice to have someone who understands what it's like to have challenges in life. I have a decent understanding of spina bifida but feel like there's still a lot I want to understand. We talk a lot about some of our challenges and it is really nice to be open and honest about...
  • recently got diagnosed with sbo s1 and not sure what all to ask. just had an mri done and am awaiting results. i have no clue what i should expect or what i should listen for that may mean bad news... anyone have any advice for a newcomer?