Monday, January 27, 2014



The February, 2014 issue has a great cover article on the brain and scientific research.  Definitely worth the read.  They talk about upcoming possibilities, as well as recent developments.  Didn't see anything about hydrocephalus specifically, but still it was very interesting.

I know that I've been accused of being against brain research, which is NOT true.  I'm just frustrated by this 'need' some have to 'fix' hydro and who see all of us with it as needing to be 'fixed'.  There are so many breakthroughs yet to come, generally, in neuro-research, I find it facinating.  There was a time when the medical community knew nothing of folic acid or its role in congenital hydrocephalus.  Knowing about it has greatly reduced the number of congenital hydrocephalus.  If only those in the media would define what 'neural tube defect' is, it would be more clearly understood.

No matter what the breakthroughs in neuroscience research are when it comes to the brain in general and hydrocephalus specifically, there are so many causes (accident, concussion, TBI, spontaneous--NPH...) that there can never be one definitive, one-size-fits-all 'cure' out there.  Prevention is the best option, which means education and knowledge.  I've mentioned to a researcher about my theory that my family may have (on my mother's side) a particularly low folic acid lcvel.  Back in 1901, when my great-uncle died of hydrocephalus at a month of age, folic acid wasn't known about.  His hydro 'just happened".  Maybe it was just a statistical occurance, but the theory could actually be fact, but that doesn't appear to be an area of interest for many researchers or their funders.

Education and being the living examples of living well with hydrocephalus is why the support group takes part in the annual Brain Awareness Open House event at the University of Washington.  We don't all 'suffer' with hydrocephalus, we live with it and have productive lives.

No comments:

Post a Comment