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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  • storm1485

    Hello to everyone

    2
    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...
  • molly.storms

    alone

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    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
  • Niccid

    Hi

    0
    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?
  • unisailor

    Help my Friend!

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    Hi Everybody,I have severe cerebral palsy but despite this I am able to sail independently using a yacht, especially designed for people with challenges. Although I live in Auckland, I was lucky enough to meet the Napier Sailability Team in March. In April, four of the Napier Sailability Team did the impossible and crossed a stretch of water between the North Island and South Island of New...
  • jelmerh

    Your personal stories

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    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...
  • After a couple months of back pain in one spot on my lower back I finally gave in and got it looked at. The dr said its SB but didn't specify what type. We only talked over the phone. When I was in his office he wanted to write me a prescription for NSAIDS which I cannot take so he basically said that's that and today I was told there isn't much that can be done. After 31 years of no symptoms and...
  • deleted_user

    Height

    I've heard that Spina Bifida can stunt your growth. Anyone else heard this?Just for comparison sake, I thought we could all compare height. If you're a parent of a child with SB, please give their age, too.
  • sarahlouiseuk

    New here

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    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.
  • I'm not sure if this is the right forum for asking questions about babies with sb. My baby is due this weekend and we just found out about a month and a half ago that he has spina bifida as well as hypoplastic left heart syndrome and a whole in his diaphragm. They are not giving us much hope that he will live. They are thinking that he has Trisomy 18. It is all overwhelming. Is there anyone...
  • myawesomelyfe33

    Vent

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    Whew... My Urologist is causing my anxiety and panic to reach a new high!! 1st of all in my area he is not a Spina Bifida specialist but he is the only Urologist I can go to. I have Hydronephrosis which is fluid filled kidney but it is not from reflux. My Urologist knows I am hyper sensitive to tests involving invasive things such as dyes and such. Yesterday he had me do a nuclear medicine study...
  • poolesvillegal

    mental illnesses

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    does anyone here who has spina bifida also have some form of a mental illness? I have been dx with schizoaffective disorder and anxiety and bipolar 1 and an eating disorder. i really could use someone going through any of these things to talk about it openly.
  • if anyone here has sb and is dealing a eating disorder I sure would love to chat. I have sb and hydrocephalus and I am in treatment for bulimia. It is tough I feel like the only one who is dealing with this combination of issues. I am doing great in my recovery but in order for me to continue to do great I feel I need to chat with others going through similar circumstances.
  • deleted_user

    Preparation for pregnancy

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    Hey everyone! I'm looking for advice or for people with Spina Bifida to share their experiences on pregnancy and childbirth.I'm 30, I have Spina Bifida and I am hoping to start trying for a child within the next year and I basically, like everyone else, want to give my child the best possible chance from the beginning. I know that they all say that people who are living with SB should be having...
  • myawesomelyfe33

    Hydronephrosis

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    Has anyone who has Spina Bifida ever been told they have Hydronephrosis (fluid filled kidney) If so, what was done to fix it? How do you deal with the pain? I have had it 4 years and nothing has been done. Too much pain for too long!