Saturday, 26 October 2013

Spina bifida and hydrocephalus awareness week 2013: day 8: Final Post and Thoughts for Spina Bifida and Hydrocephalus Awareness Week 2013

  Today  is the last day of Spina Bifida and Hydrocephalus  Awareness Week 2013. 
What seemed a lot of days stretching before me just a week ago has gone in a flash. In this blog post I would like to give thanks to all the doctors and nurses who helped save my life when I was in hospital due to my hydrocephalus , and who treated me then as well as everyone who has treated me for this throughout my life. Thank you to Mr Teddy and his team at Great Ormond Street Hospital in London, as well as the hydrocephalus specialists at the John Radcliffe Hospital in Oxford and those who treated me at the Radcliffe infirmary , also  in Oxford. Thank you to ASBAH  in West Sussex , Oxfordshire, and Shine Charity (which used to be called ASBAH ) . 

 I have been aware of efforts to raise disability awareness, but until recently I didn't think about raising it myself. I thought about this more and more,  until one day in September 2012 Katherine Hayward my life with cerebral palsy was born. Even though the word hydrocephalus is not in the title of my Facebook page, the page is all about my life with cerebral palsy,  hydrocephalus and my eyesight difficulties. These disabilities are just a part of me , not all of me, and I'm very glad to have participated in Spina  Bifida  and Hydrocephalus  Awareness Week 2013. 

All of my blog posts are dedicated to people I know and admire with spina bifida and/or hydrocephalus, Tania Nurton, Tanni Grey Thompson,  Ali, who I knew at the University of Reading, all the organisers from Shine charity , and,  in short , everybody with spina bifida and / or  hydrocephalus. I know that my awareness Facebook page and blog posts will not make a massive change to life for people with spina bifida and/or hydrocephalus, but I would like to think that they will at least  be able to identify with, and , maybe learn something ( that would be even better! ) from my experiences. 

Also through my Facebook page and blog I want to reach out to people with cerebral palsy , hydrocephalus and other disabilities to show them that they are beautiful, amazing and that their life is worth are the links to my page
and blog : 

During the week, I managed to blog every day, wear yellow (although I didn't find any yellow makeup! ) , posted on Facebook,  Tweeted , Pinned to Pinterest and really feel I've " done my bit" towards spreading awareness for Spina Bifida and Hydrocephalus . 

As a final thought, if I was asked whether I thought that there was enough investigation for hydrocephalus and spina bifida I would definitely say no and that a lot more has to be done to improve people's quality of life, and the products and support services available . If I was asked to give advice to people I would just say be who you are and follow your dreams in life as life is too short not to! On that happy note, I'll stop writing and there's not much else to say, except I'm really looking forward to the Spina Bifida and Hydrocephalus Awareness Week in 2014, and all those to come. 

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