Raising Awareness For Hydrocephalus: My Story

I'm only 20 years of age and already I've had a number of obstacles thrown at me from this thing we call life.

The biggest obstacles in it have been my two disabilities I'd say, they have been there all my life but it wasn't until I was about 1 year old or 18 months old I was officially diagnosed with them. What are they? they're Hydrocephalus and Hypotonia. Each one I shall go in to a little more detail about later on.

What is Hydrocephalus?

Hydrocephalus (Water on the brain) is a build up of cerebrospinal fluid in the ventricles/cavities of the brain and often leads to an abnormal enlargement of the head due to an excessive build up of pressure on the brain and often means brain damage, convulsion (sudden movements of limbs), mental issues and tunnel vision. There are things out there that can help for example what I've got and that's a shunt which is a tube that runs from your head to your stomach and stops a build up of fluid and pressure on your brain you can get one that you can switch off if you like or one that runs continuously. Hydrocephalus isn't terribly visible but many suffer from it and it can even cause death in adults and most commonly young children.

What is Hypotonia?

Hypotonia(low muscle tone). Hypotonia doesn't sit under a specific medical disorder but in fact, is a group of different disorders that affect the motor nerve control from the brain. Just like hydrocephalus there is no cure for it however it can be helped if caught early enough. It can be helped in certain aspects.

My Story

It is at this point I really must thank my Mum, Gran and Grandad it was their stubborn ways that got me diagnosed with the two of them before it was too late. My Mum had her mothering instinct from Day One telling her something was wrong as when she'd sit me down I would always fall to the one side, it was like my balance wasn't there. So she took it on herself to take me to our Local Hospital to demand some answers the answers she was given were not the ones she was looking for. The Hospital - that I won't name put it down to me being 'A lazy child' which was so far from the truth and my Mum knew it.

Still not content with the answers she was given they took me to Yorkhill Hospital for a second opinion, which would prove to be a smart move as they took me to one of the top people in the Country to get his opinion which he raised concerns straight away (I can't remember his name) anyway, he ran all the test he could think of to get the proper diagnosis, it was a simple pin test that confirmed his thoughts as he stuck a small pin like object in the back of my head and water began to drain from my head, water that had built up in there for so long. Which prompted this Surgeon to say 'She needs an operation NOW!' and so the next part of the journey began, one that would take me to the Southern General in Glasgow the top unit for brain injuries or any surgery to be carried out concerning the head.

As soon as that happened it was known that I was suffering from Hydrocephalus and the only way to stop it becoming any worse was to Operate as soon as possible. What did the Operation include though? Well, it included inserting a tube that would run from my head to my stomach to drain the fluid from my head down to my stomach and relieve my brain of any unnecessary pressure. Also known as a Cerebral Shunt or just a Shunt.

The long awaited operation was then booked to be carried out, it was then cancelled as money took over urgency which left my Grandad extremely angered as he late found out why it was cancelled.

The operation was rebooked for a later time not too much later though with the severity of it. It took the surgeons two attempts to get the operation done correctly and to this day I have the scars to prove it, one unsuccessful and one very successful. It was agreed that the best Cerebral Shunt for me would be one that was constantly running and one that would eventually uncoil to suit my height as I got older seen as I was only small when I had it put in. Once they had done the operation they told my mum had I been left any longer then I could've gone blind or worse, died.

I remember waking up in the Southern General after having the Op. Of course, being a normal toddler I was very, very inquisitive, being nosey and a pain pretty much. I remember the fact that my Mum or someone had put a clasp in my hair to cover the shunt because to this day I have a lump in the back of my head where they put it in. I remember the clasp being a white one with cut out flowers on it. I remember receiving a few slaps for touching it!

It wasn't that they were ashamed of me for having this lump in my head it was purely to stop me touching it. I have always had an abnormally large head compared to other kids my age, that's just part of being a Hydrocephalus sufferer.

All through School I was bullied about them, called all sorts 'a freak' and 'a mongo' just about everything you can probably think of. I was left on my own, isolated away from everyone because of these two difficulties. It was never easy. Primary and Secondary School they were both the same full of small minded individuals who got a kick out of making others feel like rubbish. The day I left both of them I became a much happier person knowing I had got rid of those who kicked me while I was down for the rest of my life.

I remember watching on as the other kids ran about crazy, kicking footballs about, swimming, etc being kids really I remember thinking to myself 'Why can't I do that? Why can't I be normal? Why me?' I could never quite understand it.

To this day I still have my down days with it, some days I'm brand new and love life, other times I sit there like 'Well this is crap!' I know there are people worse off than me and I do really respect those people but I think everyone has their down days, right?

I am a much happier person I seem to be doing well at College, I've got my beloved Rangers Football Club, my blog writing and a great set of friends and family. I really don't know where I would be without a select few, you should know who you are. Just thank you for being there, I love you! I've seen myself in the past telling people I have these conditions and they've backed away and told me they don't want to associate with me because of them like 'Ha you're disabled f!!k that! bye!' which has knocked my confidence a great deal.

I remember being at Academy and speaking to my Biology teacher, Mr Minto about them and him saying that my knowledge of both conditions was amazing for a young girl. I still don't understand why he was so shocked! It's something I've had all my life, both of them are and I will have them for the duration of my life too. I've learned things every step of the way. Things I can and can't do, things I can do to continue living my life the way I want to, not letting Hypotonia and Hydrocephalus run and ruin it for me.

I haven't really spoke up much about my conditions, it's not my style. I don't look for praise or that about them I just feel people should be made more aware of them and the struggles that their sufferers face day in, day out. Although I must also stress that we're not weird, we're not freaks, we're just people who find things a little more difficult. We have feelings just like everyone else, we may just do things differently, that's all.