Our community

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

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

Hydrocephalus can be congenital or acquired.

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 CSF around the obstructed pathways back to the bloodstream.

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

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

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

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.

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

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.

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

Babies born prematurely are at increased risk of developing hydrocephalus.

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.

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

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

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

Spina bifida occulta is a hidden form of spina bifida.

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

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

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