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'Hidden Heritage' brought to life with unique exhibition

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A unique exhibition is bringing to life the fascinating heritage of medical conditions which have been around for thousands of years.

The first exhibition of its kind in Europe, Spina Bifida and Hydrocephalus: Our Heritage launched in July 2016.

Organised by the charity Shine, with funding from the Heritage Lottery Fund, the exhibition showcases the early history, developments in support and treatment, and changing attitudes towards these complex conditions over the decades. A key feature is the personal experiences brought to life through photographs, artwork and oral histories.

Exhibits include a device created by best-selling author Roald Dahl. In the 1960s, Dahl was inspired to develop a new, improved valve for a ‘shunt’ - a tube-like device used to treat drain away harmful excess fluid in the head - when his son Theo developed hydrocephalus after an accident. Dahl’s innovation helped some 3,000 children with hydrocephalus until newer styles came along.

Spina bifida and hydrocephalus have been around since pre-Tutankhamun days. Treatments improved significantly in the 1960s, and this is the first generation of adults surviving into their 50s and beyond. Shine provides a range of specialist services for people with the conditions, and marks its golden anniversary this year.

Heritage Project Development Officer, Marc Lupson, commented:

“Bringing this hidden heritage into the open has been a challenging, but fascinating journey. This is really an exhibition about people; the pioneers, doctors, and most importantly, the thousands who make up the spina bifida and hydrocephalus community. I have only been able to scratch the surface of this rich and deep history.”

Robyn Llewellyn, Head of Heritage Lottery Fund East of England, said: “This new exhibition will bring the history of these conditions to a wider audience, and shine a light on the often hidden experiences of those who live with them day to day. We are delighted that, thanks to National Lottery players, we have been able to support this meaningful project”.

An online archive called ‘The Shine Library’ has also been created, allowing the public to access a range of archived publications and documents, recordings, videos and images, some dating right back to the early 1960s.

Acknowledging the global significance of this body of work, the exhibition, which has been housed at the charity's office in Peterborough, has already been on display in Belgium and will be travelling to various locations in the UK this year. Open for public viewing by appointment. Contact val.stokes@shinecharity.org.uk or T: 01733 421356 to book.

The charity is seeking a more permanent home for the exhibition in the future. 

http://bit.ly/shineheritage

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Did You Know?

Some babies with spina bifida are now operated on before they are born, via keyhole surgery.

Hydrocephalus can be congenital or acquired.

NPH (Normal Pressure Hydrocephalus) is an excessive build-up of fluid in the head.

Hydrocephalus is a build up of excess fluid in the brain.

Some 11 - 35% of people with Intracranial Hypertension recover spontaneously!

Most babies with spina bifida undergo surgery within 48 hours of birth.

“Every effort should be made to ensure that all children are immunized, no opportunity to immunize should be missed.”

If you have spina bifida +/or hydrocephalus you should receive the same vaccinations as any others, when going abroad.

Hydrocephalus comes from the Greek "hydro" meaning water and "cephalie", meaning brain.

Some forms of hydrocephalus require no specific treatment.

Medical advice should always be sought if shunt infection is suspected!

Shunt: a device that diverts accumulated cerebro-spinal fluid around the obstructed pathways back to the bloodstream.

Possible signs of chronic shunt blockage include: 
fatigue, general malaise or behavioural changes.

A shunt alert card should be carried at all times by people with hydrocephalus treated by a shunt.

Possible signs of acute shunt blockage may include: visual disturbances, drowsiness and seizures.

Symptoms of Normal Pressure Hydrocephalus are similar to Alzheimer's, Parkinson's disease or simply increasing age.

NPH (Normal Pressure Hydrocephalus) occurs most often in people aged over 60.

Benign Intracranial Hypertension aka Idiopathic Intracranial Hypertension affects about one or two in every 100,000 people!

Symptoms associated with raised intracranial pressure; headache, visual disturbances, photophobia, vomiting, problems with balance...

Diagnosis of Intracranial Hypertension is by scan + measurement of the CSF pressure.

Babies born prematurely are at increased risk of developing hydrocephalus.

Shine can raise money by recycling your used inkjet cartridges, toners or CDs and DVDs.

Para-athletes with spina bifida and hydrocephalus compete in sports ranging from cycling to dressage.

Hydrocephalus may affect memory, concentration and behaviour.

The usual treatment for hydrocephalus is to insert a shunt into the brain.

CSF stands for cerebro-spinal fluid.

Benny Bear is a teddy with hydrocephalus who helps children understand the condition.

Shine is always looking for Marathon Runners to help with fundraising.

Spina bifida occulta is a hidden form of spina bifida.

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