Congenital spinal dysphrasism, is there anyone else who suffers this I can talk to, I feel very lonely not knowing anyone with this.

[clairey1]

I suffer with this condition and have no one I can speak to about what day to day life is like.

I am hoping someone will help me by connecting with me or know of support group I can join.

Thanks

[Heorte]

have you tried shinecharity.org.uk ? Although it's spina bifida initially, I think they go wider to include all neural tube conditions

[clairey1 in reply to Heorte]

Thanks for your help, I have now joined the website.

[earthwitch]

You could try joining one of the spinal cord injury support groups as they have people with medical spinal conditions as well as injury related ones. I use apparalyzed.com which is quite a good one.