A great week of information sharing

As SBHI Awareness Week 2018 draws to a close, we can look back on a great week of sharing information around the conditions of spina bifida and hydrocephalus and uplifting stories from 10 of our members.

They did so in the hope that the shared human experience of their lives will help to educate the public about the conditions and to show other members that they are not alone - that we are united, as one community, by spina bifida and hydrocephalus

We thank these members for generously agreeing to share their #mysbhilife stories of strength, courage, determination, and overcoming challenges.

The purpose of SBHI Awareness Week is to make people in wider society aware that there are thousands of people living with spina bifida and/or hydrocephalus in Ireland.

Why does society need to know and why does it matter?

‘It matters because when it comes to understanding the challenges our service users and members face, we need there to be an appreciation in the first place that around 40 babies a year are born with spina bifida, and 1 in 1000 live births are born with hydrocephalus,’ explains SBHI CEO Tom Scott.

‘It will be from here that we can successfully campaign on how we can work together to improve the services on offer and the standard of life available to everyone who knows these conditions to be a reality in their lives.’

During SBHI Awareness Week, we joined in the celebration of World Spina Bifida and Hydrocephalus Day (WSBHD) on Thursday, 25th October – a day also aimed at raising awareness and understanding about the conditions of spina bifida and hydrocephalus.

While SBHI Awareness Week 2018 is now drawing to a close, the sharing of our member stories, awareness raising, and campaigning for improved services will continue.





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  • Kerry Douglas
    commented 2019-02-19 15:23:14 +0000
    How does some one with spina bifida head injury memory lodge get a will so they can leave anything to there loved one

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