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

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