Once you, or a loved one, receives 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 I can almost guarantee 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 Hydrocephalus…Now what?“
Because of this, I’ve put together a few things below which will (hopefully) help you find 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. I only have one piece of advice when exploring the groups – Not everyone shares the same opinions, views or experiences. Learn to practice the rule of scrolling on by when you don’t like something someone says or more importantly, don’t let it stop you from getting the support you need.
Since most social media groups today are found on Facebook, I’ll point you in the direction of a few I belong to personally (there are literally hundreds, if not more).
ETV: Endoscopic Third Ventriculostomy
Closed group – 574 members
Closed group – 4621 members
Spina Bifida Association New Zealand
Closed group – 479 members
People with shunts and supporters
Closed group – 64 members
Closed group – 8313 members
HYDRO HEROES WORLDWIDE (HYDROCEPHALUS)
Public group – 407 members
My New Hydro Support Friends 🙂
Closed group – 75 members
Healing hydrocephalus and Chronic illness support group
Closed group – 1070 members
Closed group – 10, 552 members
Hydrocephalus… Supporting Others
Closed group – 254 members
Hydrocephalus Awareness, New Zealand
Public group – 227 members
Brain Injury & Mental Health Support
Closed group – 4272 members
Secret group – 42 members
Closed group – 644 members
Arnold Chiari and Hydrocephalus Support and Information…
Closed group – 2776 members
Closed group – 464 members
Brainworks 501(c)3 ASBISG.org Brain Injury/Neurological Support Org
Closed group – 2845 members
Public group – 320 members
Everyone Being Aware of Spina Bifida
Closed group – 604 members
Closed group – 371 members
Closed group – 1803 members
Chiari and Syringomyelia Support UK
Closed group – 1376 members
WalkNRolling With Spina Bifida Always
Closed group – 11, 141 members
There are so many more but I think I’ll stop here for now…
*Updated as at 10 July 2019
When you do, send a request to join these groups (or any others you may find) and, once you’re accepted, you only need to remember one more 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 and use this as my main go-to 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 from time to time for some good information on Hydrocephalus is:
Hydrocephalus does not have to be a lonely world that you live in – simply because there are so many of us. The number of members per group above, hopefully helps you reach that understanding.
Just open the door and connect with others.
We cover all corners of the globe because IT IS more common than you think…