Friday, July 12, 2013

Hydro What?

Today I have decided to write about hydrocephalus.  What? You don't want to read about hydrocephalus?  When then, go read another blog... cause my blog, my posts, I decided what I write.  But you might just want to stick around, it may be interesting (and by may I mean it ABSOLUTELY will be interesting).

But before I tell you about hydrocephalus, I'm going to tell you about my best friend Mary.

Do you see the year on that? 1998! We've been friends longer than that!

You see, Mary and I met a VERY VERY long time ago around the age of 2.  And we have been friends ever since.  In fact, the first time we ever lived apart (aka other than 10 minutes away) was college (and that was a challenge... good thing it's summer now). 

This is what we do during summer... 2 summers ago

Last summer, right before school started.  

But I digress... Mary connects to my topic of hydrocephalus becase she was born with what is called congenital hydrocephalus (pronounced hi-dro-SEF-a-lus).  Hydrocephalus is when cerebrospinal fluid (CSF), doesn't properly drain from the brain.  CSF is a clear fluid made in the brain's ventricles.  A normal brain would have CSF made in the ventricles, from into the brain and into the space around the brain and spinal cord and then be absorbed by the body.  The body is always making and absorbing CSF.

Left- hydrocephalus, right-normal brain
The picture above shows two different MRI scans, with the the dark areas being the ventricle.  When CSF can't flow or be absorbed it builds up.  This is where hydrocephalus gets it's nickname "water on the brain" and that is where problems start.  A build up of CSF puts pressure on the brain and causes discomfort, and in young children can cause development issues if not treated properly.  

So how do you treat it?  The most common procedure involves brain surgery to place a shunt into the ventricles.  The shunt is used to drain the CSF into other parts of the body.  A shunt has a tube that goes into the ventricle, a valve that controls the amount of fluid drained and a second tube that drains the fluid.  The commonly used shunt is a ventriculoperitoneal (pronounced ven-trick-yoo-lo-pair-ih-tuh-NEE-ahl) shunt (VP shunt) and it drains into the abdomen.

The shunt though, is just a solution to a problem... there is no known cure.  And while congenital hydrocephalus happens to 1 in 500 to 1 in 1,000 babies, it can also be developed later on in life.  This is called acquired hydrocephalus and can happen due to (but not limited to) intraventricular hemorrhage, head injury, brain infection or brain tumors.

So what's the point of this post?  Well, in one sense it's to raise awareness.  It's not a commonly known about disease, but it currently affects over 1 Million Americans.  And while Mary has had 5 brain surgeries, she is considered one of the "luckier" ones because she can still live a normal adult life.  Depending on the severity of the case, some children often have more than 5 brain surgeries and some live with complications, such as cerebral palsy.  

And this is us a couple weeks ago.  Haven't changed one bit...
So now you're aware.  If you're interested and what to learn more, you can visit the Seattle Children's Hospital page on hydrocephalus (click HERE). Or the Hydocephalus Association (click HERE).
If you want to learn more about Mary's story you can visit her post (click HERE).
And if you want to know more about research, you can learn about the Hydrocephalus Research Guide (click HERE).

And if you became aware and you actually want to do something, the annual Seattle Hydrocephalus Walk is this coming Saturday (July 20th).  It is a free event and helps educate about hydrocephalus and options available for those who have hydrocephalus.  You can learn more about that HERE.  And I encourage you to come if you need Saturday plans.  It was a super fun experience and very educational.  And if you don't live locally, find out what hydrocephalus events happen in your area!

Team Mary from the Hydrocephalus walk 2012

So now you know know.  And it's up to you to decide what you're going to do about it! So get up, get going and have fun!  And hopefully, we'll see you at the Walk next weekend!

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