Sunday, September 20, 2015

September 2015 Meeting

I'd like to start by thanking the group for my belated birthday present.  I love the book.

It was great talking to Liz in a conference call.  Sorry my phone wasn't able to be used this time around.

We discussed many topics during the meeting.  Among them was the issue of finding "A Cure", which so many are seeking.  I've found that most of these folks are parents who are new to the hydrocephalus experience and still believe that we all 'suffer' with hydrocephalus, when that isn't the case.  As we agreed about at the meeting.  No single cure is ever going to be achieved because there are simply so many causes.  Focusing on the various causes and working from there for one of MANY 'cures', for lack of a better word, should be much more of where the focus should be.

The cause of a preemie brain bleed and resolving or peventing them would be the answer to one segment of the hydrocephalus population.  We already know that congenital hydrocephalus can be greatly reduced when women maintain a healthy level of folic acid throughout their childbearing years.  There is also a genetic link for some hydrocephalus.  Both men and women should know their family's medical histories.

Prevention is key for a lot of hydrocephalus.  Preventing brain bleeds is just one area.  Preventing accidents that lead to traumatic brain injury (TBI) is another key.  Making sure that as much prevention as possible is part of every bike ride and sport is another great preventative step.  However, it isn't a 'cure' it is about prevention to reduce risk.

Hydrocephalus is a manageable, treatable condition.  It isn't a disease, although many unfortunately use the terms condition and disease interchangeably.  We aren't all 'suffering', most of us are living our best lives with a condition that is simply part of our daily lives.  We are realizing our true value in beinig true to ourselves and the lives we've been privileged to live.  While hydrocephalus is part of life, it isn't the ONLY thing in our lives.

What many have brought up is the reality that most of the focus has been on children with hydrocephalus, with very little dedicated time put to adults living with the condition.  Those kids grow up and become adults.  Those adults go to college, get married, have kids & careers.  We are rarely shut away from the public or institutionalized simply for having a condition.  What also gets ignored are those who acquire hydrocephalus as adults--be it through accident or spontaneously, a condition now called normal pressure hydrocephalus (nph).

NPH is often misdiagnosed as Parkinson's, Alzheimers or some other form of dimentia, delaying or preventing treatment.  It is estimated that misdiagnosis occurs in 10-15% of cases before a diagnosis of NPH is made.  Unfortunately, a lot of the brain damage done is irreversable.

For those who think that shunts are 'barbaric' and 'primitive', I suggest doing research on how hydrocephalus was treated in the past, before the mid-1950's & 60's.  Even since then, shunts have been evolving, to the point where progammable shunts make invasive procedures less frequent.   At one time there was research being done on growing shunts from a patient's own tissues, to eliminate the risk of rejection and other complications.  We've come a long way in tissue harvesting and issues surrounding it, since the 70's when some of the literature was published.

We are all unique and the secret is to embrace those unique qualities, living life to its fullest.

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