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In Your Own Words

Getting the right facts about any medical condition is important for managing your health and wellbeing. But facts only give you part of the story. Spina bifida and Hydrocephalus are complex conditions, and each person experiences them differently.

So what is it really like to live with spina bifida and hydrocephalus? Read some of our members stories to find out, in their own words... 

Ali Mahraj


Ali has spina bifida. She's an active participant in our Shine40Plus group, and the author of a series of stories, titled 'Dear Body', which illustrate the frustrations, and the positives, of living with spina bifida and hydrocephalus.

Read Ali's story here...

Brett Glover


Brett has spina bifida and hydrocephalus. He's a writer, a wrestling fan, and a bit of a music buff, and says that despite the "limits" the world might see, he doesn't feel limited at all.


Read Brett's story here...

Kerry Williams


Kerry's daughter Megan has hydrocephalus. Megan was diagnosed shortly after her birth and had her first shunt operation at just 3 days old. Kerry tells us a bit about what it was like in those first few anxious months, and how proud she is of the young woman Megan is today.

Read Kerry's story here...

Want to share your story?

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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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