Hydrocephalus Awareness is everyone’s responsibility

Hydrocephalus Awareness is everyone’s responsibility

Someone you love or, even you yourself, has Hydrocephalus.  Or, you may have heard of the girl down the street’s cousin who has it.  It really doesn’t matter.  The effects of this condition, as well as the Awareness and Advocacy thereof, lies with all of us.  We do it for ourselves, we do it for someone we know or love.

This condition can affect anyone at any time.

AIDS or Cancer are two very big names in the world.  Everyone at some stage of their life has heard these words, knows someone affected by it or have felt the pangs of the destruction and havoc they cause.  (My grandfather, whom I loved very much, died from lung Cancer within a matter of months – so I know firsthand what this disease is capable of).  Strangely though, Hydrocephalus, despite affecting millions across the globe, is something most people have never even heard of.  (In fact, I don’t believe the statistics are even close when it comes to identifying the number of people with this condition).

A few months back I decided to put some blue streaks in my hair.  A symbol of awareness for the condition with which I’ve been diagnosed (just over 10 years ago).  I suppose you could say I was in the prime of my life at that point but that’s neither here nor there.  I dyed my hair because there are so many people who need brain surgery to treat this condition, lose their hair…some are fortunate to only lose a bit (at the site of their incision/burr hole) others have half a head shaved with scars that sometimes have me asking “What the..!?

The fact that my hair grew back as long as it has and covers up the scars I have underneath, is something most would not regard as significant.  But I digress…

It’s not about what I decided to do to my hair, it’s about the fact that when someone asks me about it, I get to tell them why.  If I dyed my hair pink and said it’s in support of those living with Cancer – I’m sure it would get an immediate understanding, no further explanation needed.  Maybe even a 🤛(fist pump)…but Hydro…nah!  (And, just in case you’re one of those people thinking I’m comparing the two, let me be clear, there is NO comparison).

At the very least, I get a “Your hair looks cool!

Even partaking in September Hydrocephalus Awareness month, most people tell me “We don’t celebrate that here” or “We don’t do anything for Awareness”.  Well, I don’t live in America but some states have September declared as Hydrocephalus Awareness month, others have it in October.  It really doesn’t matter to me, I just take advantage of the fact that somewhere in the world this condition is recognised, so I do my bit from way over here.  Posting things on social media and writing my blogs (It’s nothing spectacular or amazing but I hope it makes a difference).  Yes, I’m jumping on the bandwagon (why wouldn’t I?) and, it feels SO good.

It certainly would be awesome if we had an International Hydrocephalus Awareness Month.

Now there’s a thought…

What are you doing to help with Awareness or Advocacy?  For anyone who already does this, Thank you!  You’re doing it for each and every other Hydro warrior and that’s absolutely brilliant!  I know we’re not all vocal or extroverted, it doesn’t have to be anything big as long as you get satisfaction out of knowing that for one month, you’re doing something that matters.

Like a drop of water causing a ripple effect…you could effect change. Think about it…

The point is, anyone at any time can be diagnosed with this condition.  In fact, I had this very conversation with my own son a few days ago.  I told him that as he ages, there’ll be some character traits of mine he’ll undoubtedly have, even the ones he doesn’t like.  He asked sarcastically: “What, like Hydrocephalus?”  Expecting me to say “No” (with his trick question), instead, I told him “You very well could get it one day, sure you weren’t born with it but neither was I” (Lord forbid this from happening).  Point is, he is not immune…I sure wasn’t.  It’s not that I want him to live in fear of it but more the fact that I need him to be aware of the possibility.  My kids already know (a fair amount) of what I go through, seeing it first hand but, there’s so much more they don’t because, as a mother, I don’t want them to see me at my weakest moment.  They get glimpses and see only enough for them to appreciate the situation. (I hope).

As a community, we need to pull together.  Not everyone will agree with me saying this (and that’s your prerogative) but, I think America has the right idea when it comes to Hydrocephalus Awareness.  From what I can see, they are the front-runners and even though there may be issues I’m not privy to (as with all things), I think the support is absolutely admirable.  Imagine if the rest of the world took the same stand and showed their support…

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease.  As much as these experiences are unique to me and my family, I’m sure others have experienced it too.  My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

4 Comments

  • Andy K.

    October 7, 2018 at 3:29 am Reply

    Skyewaters,

    Well said with everything you wrote :).

  • MinionMayhem514

    October 2, 2018 at 12:34 pm Reply

    My state and many others have declared Hydro Awareness Month. It’s nice to see the ribbons and reposts on social media. A Girl Scout group from the other side of the country from me made it to my Facebook feed with a post to earn a badge of some kind for their troop. One of their own has hydro and they made a slideshow video of what it is and what it means for their friend. We will be doing a walk to raise money for the Hydro assiciation later this month.

    It’s truly amazing to see so many warriors, friends and family of warriors, and strangers take up the call for Awareness.

    • Skyewaters

      October 2, 2018 at 9:03 pm Reply

      That’s awesome! And yes, I love seeing it too. Awareness should be daily but I’ll take a month over nothing at all.
      Good luck with your walk💙

    • Andy K.

      October 7, 2018 at 3:28 am Reply

      Minion, Yes it sure is amazing :). God Bless You!

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