Happy UK Spina Bifida and Hydrocephalus Awareness Week 2015

October has been pretty busy for me so far. It started with a build up to World CP Day and actually getting people involved on the day, wearing green and celebrating with others too. That went quickly, then as it’s bullying awareness month I uploaded a short video about that. Now, it’s the start of Spina Bifida and Hydrocephalus Awareness Week, which means wearing something yellow. I know that in other parts of the world, such as the USA, the awareness colour is blue. I’ve grown up celebrating hydrocephalus and Spina Bifida because I was born with both conditions as well as CP. When I was a baby, my mum joined ASBAH which was the UK’s organisation for people with Spina Bifida and /or hydrocephalus and their families. It’s now known as Shine Charity and mum still remains a member as do I . 

You may be thinking “so what’s hydrocephalus?” This question doesn’t phase me -I’ve certainly heard it enough! “hydro” means water and “cephalus” means brain. Basically, it is referred to water on the brain, but it’s not water we are talking about, but cerebro spinal fluid, a clear fluid that bathes the brain and spinal cord and protects it. Usually the body can regulate the amount of CSF but people with hydrocephalus can’t and the accumulation of CSF makes the brain and skull swell as pressure builds up. 

Spina Bifida means “split spine” and happens when a baby’s spine doesn’t form and close properly. There are many forms of this like there are of hydrocephalus (I’ll go into those in another post). I have Spina Bifida Oculta. 

There’s so much I want to tell you this week about both conditions-Stay tuned for tomorrow’s post! 



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