The 46 year old Association for Spina Bifida and Hydrocephalus has relaunched itself under the name ‘Shine’ with a striking new logo. The charity’s aim is that with this new image, people will take notice of the cause and the needs of its members. It will be launched at the organisation’s national headquarters in Peterborough on October 20th 2011.
Around 1 in 1000 babies is born with congenital hydrocephalus, a condition that results from a failure of fluid to drain from around the brain. This can cause injury to the developing infant brain which can result in a life-time of memory, processing, learning and behavioural challenges. Some children face permanent, debilitating headaches.
‘One in 1000 babies means almost 8000 cases every decade, and yet this remains an overlooked, misunderstood and under-supported disability’ according to Shine CEO Jackie Bland.
‘Parents and children struggle to be listened to and accepted, with the child’s disabilities often being mistaken for bad behaviour and laziness. This misunderstanding can lead to poor development, confusion, low self-esteem and under achievement as adults – this needs to change.’
Hydrocephalus is often present alongside spina bifida, a birth defect resulting from the failure of the spine to close properly in the womb. Shine is also calling for health authorities, pharmacists and the public to unite in trying to reduce the incidence of spina bifida, which affects at least 900 UK pregnancies every year.
The birth defect is usually detected in the womb during a routine scan halfway through pregnancy. Many women choose to terminate when told, although many people born with spina bifida enjoy a high quality of life with many notable achievers in sport, drama and the arts.
‘We know that up to 70% of spina bifida pregnancies are avoidable if women take folic acid (vitamin B9) correctly in the months leading up to pregnancy’ explained Ms Bland. ‘It will be part of our new mission at Shine to ensure that more women get this message – and more importantly, act upon it.’
The charity states that many of the estimated 800 women every year who experience spina bifida pregnancies would be spared this heartbreaking experience if statutory authorities would put more into the Folic Acid message – something the World Health Authority urges all Governments to address. Shine campaigns continually for better awareness and behaviour change.
With a new name and image, Shine can continue this great cause and help to both educate the public on Spina Bifida and Hydrocephalus and help its members have the quality of life they deserve.
Posted by Emily Richardson