Tuesday, October 19, 2010

Microcephaly

Microcephaly affects 2 - 2 1/2% of the entire
population.  Microcephaly is COMMON - it is far more
common than other well known disorders (i.e.
Autism).  Microcephaly affects more than 25,000
infants in the United States each year.  

If it's so common, how come nobody seems to know about it? Whenever I tell someone about Samantha, and they are totally confused because they've never heard of "microcephaly" before, I have to explain this statement above.  It can be tiring.  Sure, Sammy's type of microcephaly is rare, but microcephaly in general isn't.  And how come whenever I type it in, there's a red squiggly line underneath "microcephaly" and the spell check doesn't recognize it as a word, even though it's a legitimate condition that 25,000 infants are affected by each year in the USA alone?  I'm not sure, but I'm feeling a little...blargh...about the whole thing today.  I guess I need to think of it more like...every time I tell someone about Samantha, and they are totally confused because they've never heard of "microcephaly" before, I have the opportunity to educate them.  That would be a better attitude.  But come on...

I think about all these other conditions/diseases/disorders that are raising good amounts of money.  I don't want to discount their work or their need...that's not my point here.  But I wish microcephaly somehow was able to gain more recognition so that we could find out stuff about this...about my child.  I'm glad when people raise a ton of money for their kid's cause; again, that's not my point.  It's just...sometimes I feel -- discouraged?  I'm not sure that's the right word either.  
Guess it's just one of those days.

1 comment:

  1. I know what you mean. That is one of the reasons we are involved with a new non-profit for 7q duplication kids - there just isn't the support or education out there for my son's group. It is okay to feel discouraged too. It is part of the roller coaster of natural emotions. You have to know the lows to enjoy the highs - right? :)

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