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Spina Bifida Hydrocephalus Ireland (SBHI) is a national disability organisation supporting over 2000 people across Ireland. Though awareness about spina bifida and hydrocephalus is often low, it is a fact that 1 in 1000 pregnancies are affected by either one or both conditions. 

This means that on average there are more than 60 babies diagnosed with spina bifida each year, with around 65% of these also having hydrocephalus. A further 70 people are affected by hydrocephalus only, either at birth, or through onset at any stage after this - hydrocephalus can affect anybody, especially after an impact to the head.

SBHI staff are present from the beginning, guiding new parents through the initial stages, and then offering support throughout the life-time the person affected, as well as guiding the families, carers, friends, and professionals who also require their specific expertise.

SBHI supports hundreds of individuals across Ireland as they seek to live fulfilled lives with spina bifida and/or hydrocephalus.

Spina bifida is a condition which affects the spinal cord, leaving many people with significant mobility issues, continence problems, and additional concerns such as pressure sores and social effects such as the challenges of isolation and loneliness.

For those with hydrocephalus, their body is unable to drain away the fluid which we all have in our brains, this builds pressure which is usually relieved by a shunt, a rubber tube which is fitted internally and drains the fluid away into the stomach.

It is common for both spina bifida and hydrocephalus to be experienced at the same time. These are life-long conditions and although there is no ‘cure’, there are many ways to enable those living with spina bifida and/or hydrocephalus to overcome potential challenges.

This is what the staff at SBHI do - we deliver unique services which ensure that everybody affected receives the best support available to them. We achieve this through our Board, SBHI Branches, a National Executives Committee, a National Resource Centre, a team of Family Support Workers, a Youth and Respite Team, our Education and Training Coordinator, and a Resource Centre in Clonshaugh.

Together these professionally trained staff combine to offer comprehensive care to everyone living with spina bifida and/or hydrocephalus across Ireland.

We need members and working partners in every area of our work - I look forward to hearing from you. I can be contacted by -


Phone: 01 457 2329


Twitter: @TomScottSBHI


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  • Tom Scott
    published this page in Home 2016-07-21 13:52:15 +0100

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