National Hydrocephalus Awareness Month--Is Here!

Hard to believe it is already National Hydrocephalus Awareness Month!  We have been talking about an array of possible ways to attract attention the cause this month.  A couple of them involve getting group tickets so we can showcase hydrocephalus.  So we are looking for supporters and those living with hydrocephalus to help in the efforts to raise awareness.

This month's meeting will be on the 19th, from 1-3 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus.  Drop ins are welcome, as well as families and anyone with an interest in finding out more about the condition of hydrocephalus.

Many aren't aware that hydrocephalus can be acquired at any age, through numerous causes.  This includes traumatic head injury (TBI), brain tumors, car/bike accident or even spontaneous (normal pressure hydrocephalus) which is often misdiagnosed as Parkinson's or Alzheimer's.  So it isn't limited to congenital hydrocephalus, which is often part of spina bifida.  Because there are so many causes, there can never be a one-size-fits-all 'cure' for the condition (it isn't a disease, although condition & disease are often used interchangeably).

The journey of life with hydrocephalus can be a bumpy one, but the majority of us still see our lives as productive, interesting & welcome the challenges that it provides.

Upcoming May Meeting

Hard to believe that we are already looking at the fifth meeting of the year! May 16th is the next meeting of the Hydrocephalus Support Group, Inc. As usual, we will be meeting in the Casey Room at Swedish Hospital's Cherry Hill campus (17th & E. Jefferson, Seattle) from 1:00 pm to 3:00 pm. We welcome anyone with an interest in hydrocephalus, no reservations needed.

PBS: Frontline Rerunning 'A League of Denial'

Just heard that Frontline is going to be rerunning the documentary about CTE, 'A League Of Denial'.  It is an excellent piece about the growing body of information about CTE, resulting in large part from concussions during contact sports--like football.  Definitely worth seeing.  Every parent with a child even considering contact sports, at any age, should watch this piece at least once.

Unfortunately, they don't mention other issues, like acquiring hydrocephalus & what that means over the lifetime of someone who has acquired it.  As we always say, every case is unique, but life without it doesn't have nearly the challenges over a lifetime.

This documentary can really open up a vital discussion about head injury in general & how it relates to contact sports specifically.  They also discuss the false sense of security provided by helments & touch on the risks for those who DON'T use helmets--like cheerleaders & soccer players.  Sad to say, one of the shortcomings is that they do talk about the 'right way' to head a ball, which is also simply wrong.  It was long ago proven that heading a ball, especially without a helmet, DOES cause frontal lobe damage.

JULY MEETING

The July meeting is on July 19th, from 12:45 pm to 3:00 pm in the Casey Conference Room at Swedish Hospital's Cherry Hill campus (17th & Jefferson, Seattle).  As always, everyone with an interest in hydrocephalus is welcome to attend.

We do have a few things on the agenda.  I've been working on some promotional/marketing ideas for September--a few look like they are going to happen!  Very excited.

An Apology

My Apology For Spelling Error

My apology for the spelling error in the previous post.  I misspelled anencephaly.

Changing subjects a bit, I have been contacted with a question about support groups (specifically in eastern Washington state) for parents of anencephaly babies.  We couldn't find anything in our searches.  Anyone knowing of an existing group, or interested in starting one can contact us.