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

 

Cricket: Dramatic Win Puts Black Caps In Finals

In Parliament: When Parliament resumed at 2pm the House passed a motion on a voice vote admiring the performance of the New Zealand cricket team in last night’s World Cup semi-final and wishing them well for the final on the weekend. More>>

ALSO:

Moon Shot/Kills Switch: The X Factor Judges Removed

MediaWorks has today decided that Natalia Kills and Willie Moon are no longer suitable to judge The X Factor and have removed them from the show. MediaWorks CEO, Mark Weldon, said that last night on The X Factor both Kills and Moon made comments that were completely unacceptable. More>>

ALSO:

Tessa Nichol: Up Up & Away In The Wairarapa

It’s an overcast morning in the Wairarapa but the mood on the ground in Carterton’s Carrington Park is anything but grey. More than 20 hot air balloons are getting ready to take off into the cloudy sky to mark the start of this year’s Wairarapa Balloon Festival. More>>

Golden Shears: Scotsman Wins Golden Shears Open Final

A Scottish shearer who settled in New Zealand to farm in Taranaki has become the first shearer from overseas to win the Golden Shears Open Shearing Championship. More>>

ALSO:

Shipped On A Bottle: Young Change-Makers Take To The Sea On Plastic Bottle Kayaks

With the aim of harnessing innovative design to construct kayaks solely from recycled materials, the “waste positive” project Plastic Bottle Kayak brings adventure into Kiwi classrooms. The call is out now for classrooms to send in messages and artwork to be inserted into the bottles. More>>

TV3 Video: Auckland Arts Festival Kicks Off

The Auckland Arts Festival kicks off March 4, with artists from New Zealand and all over the world on show. More>>

ALSO:

Get More From Scoop

 
 

LATEST HEADLINES

 
 
 
 
Health
Search Scoop  
 
 
Powered by Vodafone
NZ independent news