Hydrocephalus Awareness: Using My Story to Educate Others

Hydrocephalus Education

When you're a sufferer of such a condition like Hydrocephalus it's the easiest thing in the world to shy away, act like its not there. Maybe its down to a bit of fear but what is there really to be scared of? being bullied? I can imagine that most of those with Hydrocephalus would say that being bullied because of it is a huge fear.

The reality is that those who choose to be the bully? they're nothing short of cowards who probably wouldn't last long if they walked down the path you have, the path that lead you to deal with your condition and keep smiling. 

Speaking from experience of bullies myself I'll be honest there was times where I thought 'why me? why did this happen to me, why not someone else?' it may sound selfish but I'm sure anyone with a disability or just a general human being has had a point in their life where something cruel has happened that they've wondered why it's been them that's been set this test.

If you ask me when you've got a disability and dealt with the ignorance of people. Dealing with the small of other individuals minuscule task. You've done something special you've taken the tests that this cruel thing called life has thrown at you and you have come out fighting when the easiest thing would've been to cower away, act like it doesn't exist. 

Every human on this earth has their own special story to share. Personally I'm no different in that as recently as a couple of months ago I decided to use my own story of fighting Hydrocephalus to raise awareness and open people's eyes to a condition that is rarely brought up by people and often one of those you can't really see and it's 'rare' so it's not worth thinking about. That in my opinion, pardon the french is utter sh*t! 

Hydrocephalus isn't rare at all. Ok it's not one of the most common things out there to have but its not one of those unheard of, or rarely heard of conditions. It surprisingly probably affects more people's lives than we are currently being lead into believing. 

Personally I have felt that there isn't enough awareness for the condition, particularly in my home country of Scotland in the United Kingdom. To this day when I have told people about it I've had the responses of 'Hydro what?' or 'What's that?' thrown back at me and for me that tells me everything I need to know in terms of the awareness level in this country for such a condition. It's next to nonexistent. 

After doing my research on my own I was utterly shocked to find that the biggest Charity in Scotland which is supposed to aid those with Hydrocephalus has a connection to Spina Bifida and has the two linked and for me that sent alarm bells ringing in my head personally because I have a strong belief in that there should be a completely independent charity that is there to support those with Hydrocephalus. Not one that dabbles into the condition. 

For me, Hydrocephalus and Spina Bifida are not linked and it is possible to have one with out the other. I look at myself for example I have Hydrocephalus but I do not have Spina Bifida and I know for a fact if there was a Charity on offer that would be there to support me in my life that focused on Hydrocephalus on it's own I'd feel more confident and comfortable to speak to people about it. 

Recently I have taken it upon myself to reach out to those I know and in the world of Social Media to educate them on Hydrocephalus a little more than they already may, or may not know. I've taken my own knowledge and story and mixed it with plenty of research to do it and nothing I have told people hasn't been the gods honest truth and retraceable. 

It's been an eye opener for me personally to see how interested and keen some people have been to learn about my story and of course, most importantly the condition itself. I've even had people tell me themselves openly that they had no idea that such a condition even existed. So, I suppose in a way it's been refreshing to see that my knowledge and keenness to raise awareness has aided others and opened their eyes to it.

In my journey to show people what its like I have shown off what a Cerebral Shunt looks like, what the purpose of it is, what types of hydrocephalus there is - Congenital, Acquired and Normal Pressure Hydrocephalus(NPH) what Hydrocephalus on a whole is, what it means, about Cerebrospinal Fluid (CSF), my own personal scars, and my own story and I can tell you this is not the end, this is only the beginning as I continue my bid to help those with Hydrocephalus become more understood by the general public. 

I must stress that my push to raise awareness hasn't been for attention nor has it been for self praise its all been about the condition and has been from day one with an objective which has been clear from the offset and that's been to raise awareness, make the condition more known amongst the people of Scotland and beyond if need be not about myself and how brave I have been. 

I don't see it as bravery I see it as its life, I have to take the bull by the horns as they say and get on with it, Hydrocephalus will only beat you if you let it. While it may seem scary its really not, don't get me wrong life isn't easy when you have it and the day to day life can become tough especially with people's ignorance towards both the condition and 'invisible disabilities' in general but together we can do our own bits to change that and make people more aware. 

"The only disability in life is a bad attitude."  - Scott Hamilton.

Raising Awareness For Hydrocephalus: George Bowie!

So as a Hydrocephalus sufferer myself and a usually religious Clyde 1 listener you can imagine the shock that came over me when I opened the paper to see that their long serving DJ George Bowie had been diagnosed with the condition recently.  This comes after Doctors fearing that he was suffering from a Brain Tumour or a Stroke.   It all kicked off when George was floored by a crippling headache - something I know about all too well! 

Newly diagnosed Hydrocephalus
Sufferer George Bowie

In his version of events the Greenock born DJ was taken from the Royal Alexandra Hospital (RAH) in Paisley to the top brain unit at Glasgow's Southern General - the same unit that dealt with myself and Darren Jackson - also for Hydrocephalus and of course, Ex Aberdeen and Current St Mirren Goalkeeper Jamie Langfield for his Brain Haemorrhage. amongst many, many people over the course of time. A unit that has become the saviour of so many lives in Scotland. 

Luckily for 'Bowie Boy' for now I am lead to believe that for now he has been told that it is as not quite as bad as needing an operation to have a shunt put in.   This does not mean that he won't have to have one though, it's a waiting game for the 46 year old Radio and Club DJ.

I must admit at this point I was quite shocked to read that the Doctors had blamed George's early morning get ups and lack of sleep for the reason that the condition had flared up on him.

As I continued to read the article concerning George I read at length about how it took him going for a run before it all triggered off and how the next day on his Breakfast Show he complained of feeling unwell.   This was a case of the condition rarely heard of but shows that you don't always know when diagnosis of it will be.  

He went on to describe perfectly how the headaches the condition gives you feels - like someone has tugged your hair and a constant feeling of light headedness - like a hangover that just wont go away or jet-lag.  Which I know from previous experience and still suffer from to this day even with the shunt in, but for George there's a chance it will clear to an extent without the need for a shunt to be inserted.

At the end of the article he went on to say that for now he has not let the condition beat him, as he returned to his Saturday Night slot for GBX Anthems and resumed normality for his Breakfast Show even with the doctors telling him that the early morning get ups are going to do him no favours especially if his sleep pattern does not improve. Since when did George Bowie do anything he was told though? 

It is at this point that I must also praise Radio Clyde for how they have supported George through it, by saying they will do everything he needs to make sure that he can continue his job to the best of his ability following the diagnosis. They are saying that if the early mornings do not suit him in the coming months they will see what they can do to change things around for him.  So that he can continue his job and go back to normality again after what has probably been a tough few weeks for George and his family.

I do send him the best of wishes in his battle with the condition. 

Hydrocephalus Fact File

• Hydrocephalus is known as water on the brain and comes from the Greek hudroképhalon.
• There are different types of Hydrocephalus - Non-communicating and Communicating.
• Symptoms include: Abnormal enlargement of the head,  crippling headaches, muscle spasms,  eyes staring downwards, sleepiness, irritability - poor temper control, loss of coordination, trouble walking.
• What it Causes: progressive enlargement of the head, tunnel vision, convulsion(sudden muscle movements), learning difficulties and sometimes mental disability.
• Shunts: A shunt(there are many different ones) can be inserted into the heads of those with the condition and is designed to drain the brain of the excessive amount of fluid.  They run from your head right the way down to your abdomen.
• A study has shown 1 in 4 Hydrocephalus sufferers develop Epilepsy.  
• There is NO cure for the condition.

Together We Can Raise Awareness!

Raising Awareness is Simple.

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.