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Help bring the 'back to the front' of people's minds

Tori_ScopeTori_Scope Posts: 4,128

Scope community team

edited October 2020 in Disabled people
October is Spina Bifida Awareness Month - a time to recognise and celebrate people living with spina bifida.

What is spina bifida? 

The NHS outline what spina bifida is, and what affects it can have.
Spina bifida is when a baby's spine and spinal cord does not develop properly in the womb, causing a gap in the spine.

Spina bifida is a type of neural tube defect. The neural tube is the structure that eventually develops into the baby's brain and spinal cord.

People with spina bifida can experience:

  • Weakness or total paralysis of the legs
  • Bowel incontinence and urinary incontinence 
  • Loss of skin sensation in the legs and around the bottom
Many babies will also have or develop hydeocephalus (a build-up of fluid on the brain), which can further damage the brain.
Most people with spina bifida have normal intelligence, but some have learning difficulties.
You can listen to Maria Wall's story on Radio 4 here to gain a better understanding of spina bifida.

What causes spina bifida?

The cause of spina bifida is unknown, but a number of factors can increase the risk of a baby developing the condition.
These include: 
  • Low folic acid intake during pregnancy
  • Having a family history of spina bifida
  • Taking certain medications

Are there any treatments for spina bifida?

Treatments for the symptoms or conditions associated with spina bifida include:

  • Surgery soon after birth to close the opening in the spine and treat hydrocephalus
  • Therapies to help make day-to-day life easier and improve independence, such as physiotherapy and occupational therapy
  • Assistive devices and mobility equipment
  • Treatments for bowel and urinary problems
With the right treatment and support, many children with spina bifida survive well into adulthood.

It can be a challenging condition to live with, but many adults with spina bifida are able to lead independent and fulfilling lives.

What would people with spina bifida tell their younger selves? 

Shine, a charity providing information and advice about spina bifida and hydrocephalus to individuals, families and carers, are inviting adults with spina bifida to share what they would tell their younger selves. You can watch some of the videos here on their website.

Chris:

 There is no kind of normal... you will find your own way
Ayesha
Things can only get better if I make them better

Will you go 'Back to Front'?

Shine would like members and supporters to get involved in Spina Bifida Awareness Week by going Back to Front', to help them raise funds and bring the 'back to the front' of people’s minds.

Dressing back to front in your clothes is a fun and simple way to raise money and awareness. You could get your club, school, or workplace involved too!

What would you tell your younger self? What would you tell a young person with spina bifida? Will you be dressing back to front to raise awareness of spina bifida? 
Online Community Coordinator, she/her

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