Saturday, 18 October 2014

30 Day Blogging Challenge: Day 19: Spina Bifida and Hydrocephalus Awareness Week 2014


Tomorrow marks the start of UK spina bifida and Hydrocephalus awareness week 2014. For those of you who don't know what these conditions are, they are both neurological conditions, and both present from birth. Most countries have their own national organisation for people with these disabilities, and the UK one is called Shine charity.


 Here is the website. 
They have helped me for years, from my diagnosis when I was two weeks old to when I had operations, and more recently, with other queries about pregnancy and ageing with Hydrocephalus. I get their magazine through the post. The magazine is called Together, and inside it, they talk about recent developments for the management of spina bifida and Hydrocephalus, real-life stories of people with one or  both conditions, and also fundraising efforts. Here are some articles which explain what Hydrocephalus and spina bifida are .

 When I was born, the doctors diagnosed  me with spina bifida occulta,the least severe form of spina bifida. In this form, spina bifida does not cause a tumour to grow on the spine, but it does cause for example dimples on the back. 

However, my Hydrocephalus is severe. When I was born, I had a severe brain bleed on both sides of my brain. The doctors measured the size of my head, and saw that it was rapidly growing as my brain was being pushed out by the increased pressure inside my skull . They diagnosed me with Hydrocephalus because of this, and my movement difficulties were diagnosed as spastic quadriplegia cerebral palsy.
 Because I was so premature and so unwell, they only noticed it after I had been taken off the ventilator to help me breathe from the moment I was born.
I had surgery to have my first shunt in , but I was very unwell during the operation, and it had to be abandoned
I will tell you more about that tomorrow and during this week. I will be posting a post about Hydrocephalus and/or spina bifida throughout the week. The awareness colourful birthdays disabilities is yellow, so make sure you wear something yellow during the week, and be aware for people with Hydrocephalus and spina bifida, especially on the 25th! 



2 comments:

  1. Thanks for flagging this to me Katherine. Shine supported me last year when I was told that I have a spina bifida occulta.

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  2. Thanks for spreading the word sis - I'll be wearing yellow on 25th! xxx

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