News Video | Policy | GPs | Hospitals | Medical | Mental Health | Welfare | Search

 


World Spina Bifida & Hydrocephalus Day


PRESS RELEASE

World Spina Bifida & Hydrocephalus Day


New Zealand will be the first country in the world to mark the first ever day to celebrate the lives and achievements of children, young people and adults living with Spina Bifida and Hydrocephalus. The theme of the day, celebrated on 25 October, is “UNFOLD their potential, (Y)our Return on Investment”.

The day is being marked internationally in the European Parliament, Strasbourg with a photography exhibition featuring entries from Spina Bifida Associations worldwide, a capacity building workshop on Employment and Ageing, a presentation on the UN Convention on the Rights of People with Disabilities, a presentation aimed at improving job opportunities for people with Spina Bifida and Hydrocephalus, and a presentation on advocacy and networking for the rights of people with disabilities.

There are over 1550 people of all ages in New Zealand living productive, fulfilling lives with Spina Bifida.

Spina Bifida is classed as a Neural Tube Defect and is the most common birth defect to occur worldwide, when the spinal column of a baby does not develop (close) properly. This condition affects 1 in 1000 pregnancies and occurs within the first 28 days of conception, prior to many women realising they are pregnant. Whilst pre-conceptual folate supplements are recommended (400 mcg (0.4 mg) of folic acid daily before and during the first three (3) months of pregnancy) to reduce the incidence of pregnancies affected by neural tube defects by between 70-92%, they are not a sliver bullet and many New Zealand families have welcomed amazing children born with Spina Bifida, despite taking supplements as recommended. About 80 percent of people with Spina Bifida also develop Hydrocephalus resulting from the accumulation of excess cerebrospinal fluid in and around the brain. A shunt is usually inserted within a few days or weeks of a baby being born to drain cerebrospinal fluid from around the brain.

Spina bifida is more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.

In the USA a Spina Bifida Awareness campaign is run annually and this year the photography and messages are outstanding. They have touched many in the Spina Bifida community and are able to be viewed here .


Finding out you are pregnant with a baby diagnosed with Spina Bifida can be very difficult for parents, but there is support available for those facing this challenge. The chance to talk to other parents who are going through, or who have gone through the same thing is invaluable and reassuring. A number of organisations are available to help people help during this time. The big message is that there are many decisions to make and you don't have to do it alone. So if you need help or advice, please contact us, Parent to Parent or The Therese Programme.

On this special day to celebrate our people, Spina Bifida New Zealand would also like to pay tribute to all the medical professionals, therapists and support staff who look after our children, young people and adults. From Paediatricians, Neurosurgeons, Ophthalmologists, Orthopaedic, Spinal and Paediatric Surgeons, to Physiotherapists, Occupational and Speech Language Therapists, Special Education and Early Intervention services, Enable and Accessable for provision of disability equipment. These people become so much part of our everyday lives and their expertise and input is greatly appreciated.


ENDS

© Scoop Media

 
 
 
 
 
Culture Headlines | Health Headlines | Education Headlines

 

August 4: Centenary Of New Zealand Entering The First World War

PM John Key: I move, that this House recognise that on the 4th of August 2014, we will mark the centenary of New Zealand entering the First World War... More>>

ALSO:

Cyclists Net First NZ Gold

New Zealand won a gold meal and two bronzes on the first day of the Commonwealth Games. There was joy and heartbreak in an incredibly full day of sport. Here's how the New Zealanders fared. More>>

Cap Bocage: Anti-Mining Campaign Doco Debuts At NZ Film Festival

Playing at this year’s New Zealand International Film Festival, Cap Bocage is a close-up exploration of the forces that came into play when environmental issues and indigenous rights became intertwined in New Caledonia ... More>>

Film Fest:

More Film:

Sharon Ellis Review: A View From The Bridge

Arthur Miller’s A View From the Bridge is Circa’s latest big production, it opened on Saturday 19 July and it is a stunning triumph. More>>

Māori Language Week: He Karanga Kia Kaha Ake Te Tīhau Ki Te Reo Māori

The Māori Language Commission wishes to see social media swamped with Māori language tweets and messages for Te Wiki o te Reo Māori using the hashtag #tekupu. More>>

ALSO:

Book Vote: Kiwis Prefer Young Adult & Classics

To compile their Top 100 List for 2014, Whitcoulls again asked New Zealanders to vote for their favourite books and authors. And while classic novels continue to appeal to Kiwi readers, 2014 marks a significant new trend – the increasing popularity of novels for young adults. More>>

ALSO:

Five NZ Cities: Bill Bailey Back To The Southern Hemisphere

The gap between how we imagine our lives to be and how they really are is the subject of Bill’s new show Limboland. With his trademark intelligence and sharp wit, he tells tales of finding himself in this halfway place. More>>

Scoop Review Of Books: Book Television Is Coming

Carole Beu of The Women’s Bookshop in Auckland, Graham Beattie of The Book Blog and producer Deb Faith of FaceTV have raised enough money via crowd funding at Boosted – just under $7,000 so far – for 12 episodes, which begin production in September, and will be on screen later that month. More>>

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news