Hydrocephalus

I was born with a rare brain condition called Hydrocephalus.

To put it in the most simplistic terms, in every person’s brain we have fluid (CSF fluid) that travels round our bodies. In a Hydrocephalic, the one of the several tubes that carry this fluid round for us is blocked so we have to have something to aid in bypassing that fluid.

I have what’s called a VP shunt. This is a thin tube that starts in the top of my head and finishes in my tummy where it coils round and round so that I have lots of room to grow.

How does Hydrocephalus effect you physically?
Although I was quite blessed in that my Hydrocephalus has not made me look in any way abornormal, don’t be fooled! It definitely shows itself in other ways. I also have 3 absolutely massive scars on my stomach and chest where the shunt was inserted as a baby. See those here.

How long have you had Hydrocephalus?
I was diagnosed a few hours before my mum gave birth to me and had my first shunt put in at 24 hours old.

How does Hydrocephalus effect you mentally? You seem fine to me…
A common misconception among Hydrocephalics is that because we look and speak normally (though not everyone does), there are no problems. This is why another name for it is ‘the hidden disability.’ Hydrocephalus effects my gross and fine motor skills eg. I can not drive or play sports, I can not cut my own food (on my worst days), I was very slow to learn how to swim (and still can only just) and a few other minor things eg. my walking is slightly abnormal, my balance is very bad, I have a visual perception defecit (which means I can not gage distance properly) and a left sided weakness etc.

I also have a very weak immune system so I seem to catch every illness going. I have chronic fatigue syndrome meaning I get VERY tired very easily and I have dabbled in and out of eating disorders my whole life.

Your videos of you walking around heavily contradict this page…
http://marylily2.tumblr.com/post/23759062957/i-suffer-emotional-difficulties-and-my-gross-and-fine