When you want to post a message to the group, you simply write an email and send it to a single, centralized address.
Then, each member of the group receives a copy of your message via email.
Lillie said: 'Her neural tube had failed to develop.
She was paralysed from the waist down, had no control of her bowels or bladder and had hydrocephalus which meant the fluid which forms around the brain and drains into the bowels through this tube would remain trapped in her head and cause swelling if they didn't use drugs or failing that, a shunt.
I grew up in the Caribbean as well so doctors didn't know much about it at...
I'm 22 years old and I was born with spina bifida and have a shunt.
To respond, they can just reply to the message, and again – a copy of the reply will go to every person subscribed to the mailing list.
Using email, these online groups allow people who have a common interest to converse. Chat rooms require you to go to a specific online location and sign in, so that you can interact with another person or group of people in real time. The SBAGNE and SBA have created forums for a group of people to share ideas on a given topic – in this case – Spina Bifida. To do this, you either send a “subscribe“ message to a designated email address or go to a web site and follow a set of instructions to have your address added to the mailing list for the group.This transition period can be challenging, especially for people affected by spina bifida.It is important for the parents and caregivers of adolescents and teens with spina bifida to take active steps toward making them independent starting in childhood, so that by the time they are older they can develop the necessary skills to help them reach their full potential.They might begin to make their own doctor appointments and continue to participate in updating their own Individualized Education Plan (IEP) or 504 Plan, if they have one.They also should participate in a seating or wheelchair evaluation at least once each year if they use a wheelchair.