Hydrocephalus : Finding support

Hydrocephalus : Finding support

Once you receive a diagnosis of Hydrocephalus, it’s easy to get swept up in the whirlwind of emotions and lose track of life a bit.  One thing that stands for sure, is the support you will come to need, especially when you don’t know which way next.  We all have questions and we all have experiences which may or may not be unique to us.  Chances are, the things you’re thinking about, questioning, fearing, celebrating, etc…others have been there before.  Most times, people ask, “I’ve just been diagnosed with this…What now?

Because of this, I’ve put together a few things below which will (hopefully) give you a head start in the way of finding some direction.

You might be looking for others near you, people you can connect with or who can provide a feeling of familiarity (like family). For this, I will point you in the direction of a gentleman named Ron Patrick Kelleher (Hydropioneer).  Ron is instrumental in connecting people across the globe.  I would like to use this opportunity to say, “Thank you, Ron, for all that you do.  You’re Awesome!” When I found myself at this exact point in time, Ron “shunted” people my way and set up some of the connections I now have.  Admittedly, some I’ve used, others not but that doesn’t mean it’s wasted…Think of it more as meeting a group of people (acquaintances) and then making more meaningful friendships with a select few.

What you’ll also need, are the support groups where you get access to a plethora of information and journeys, ready for the sharing!

The people who belong to these groups are a combination of fellow Hydro warriors or their loved ones, all with a common goal and in search of support and advice.  Since most social media today is via Facebook, I’ll point you in the direction of a few I belong to personally (there are literally hundreds, if not more).

ASBISG.org

Daily Hydrocephalus Factoid

ETV: Endoscopic Third Ventriculostomy

Healing hydrocephalus A support group for patients

Hydrocephalus Awareness, New Zealand

Hydrocephalus Support Association (Australia)

Hydrocephalus World Group

Hydros Unite UK

People with shunts and supporters

Some of these are closed groups so you might need to copy the name in this post and use the Facebook search box to find them.  When you do, send a request to join and once you’re accepted, you only need to remember one thing:

There is no stupid question…

Depending on your needs and personal circumstances, you might find that you identify more with one group as opposed to the next, it really doesn’t matter.  Also, I joined the ETV: Endoscopic Third Ventriculostomy group after being a part of the others. The reason is simple.  I had an ETV done after I initially had a VP Shunt placed, meaning, my needs changed.  This will happen from time to time but finding the group that gives you the most benefit and meeting people who you can connect with, making those ties in a beneficial way…is priceless.

Another useful place I visit quite often for some good information on Hydrocephalus is:

http://www.hydroassoc.org

Hydrocephalus does not have to be a lonely world that you live in – simply because there are so many of us.

Just open the door and connect with others.

We cover all corners of the globe because it’s more common than you think…

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!

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