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Shine40Plus

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Shine40Plus provides opportunities for people over the age of 40 living with Spina Bifida and/or Hydrocephalus to come together to make connections, share experiences and act as a collective voice for their pioneering generation.

Shine members in this age group can:

  • join a well- established and lively online community in the Shine40Plus closed Facebook Group
  • share crafting ideas in Craft4Shine
  • join the Shine40Plus Book Group
  • take part in live discussions in Café Shine

Members of Shine’s specialist Health Team are on hand to answer any queries and organise health discussions online, and the groups are well supported by a team of Peer Support Volunteers who lead on group activities.

Once a year members come together at the Shine40Plus national conference.

Shine40Plus is making sure that people in this age group have a place to bring their individual and shared issues about getting older with Spina Bifida and/or Hydrocephalus. They can also celebrate achievements. As the first generation to highlight these, they are not only helping themselves, but also paving the way for succeeding generations.

For more information please contact:

Robin Barnatt via Facebook or E: robin.barnatt@shinecharity.org.uk or T: 01733 421355 

Liz Potts via Facebook or E: liz.potts@shinecharity.org.uk or T: 07789 616469

Sharon Lapsley via Facebook or E: sharon.lapsley@shinecharity.org.uk or T: 07876 865231. 

Alternatively, you can fill in the form below and a member of the Shine Team will be in contact with you shortly.

To join Shine please go to www.shinecharity.org.uk/membership

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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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