Monday, March 4, 2013

Since Will was diagnosed with Leigh's I've tried to research the basic stuff - why, when, cure, when, why...

It seems like mitochondrial diseases are "all the rage" now and seem to have been for the past five years or so - the technology, science and interest in how our bodies mitochondria work or don't work have become "game changer" in the understanding of many diseases.

Sometimes I call it in my head an epidemic. It's not really by the definition of an epidemic, but it just feels that way after being thrust into this mito world. You hear and learn more and more about mito when we had never heard of it before.

I'm 32 and if you rewind to the HIV/AIDs epidemic, that happened in some of my very formative years. It was something I would hear about on the news - not the Internet, being online wasn't widespread to teenagers in the 80s and 90s. (we played outside haha)

It feels like the mitochondrial disease world is in it's infancy, just like HIV/AIDs 30+ years ago. Now, we see HIV/AIDs cured in a child -

After I saw that, my first thought was it's happening - a cure arrived for something that at one time, just a mere 30 years ago - was thought to be a death sentence.

I hope and pray that the mito research community is able to use the new science and technology out there to speed up this process and maybe, just maybe one day a cure will happen in the mito community.

Sorry for my rambling thoughts this Monday morning....


  1. It's amazing what can happen when a doctor fearlessly follows their gut. Let's hope one of our Mito docs will have the same fearlessness when they have their "lightbulb" moment.

  2. in my blog tomorrow, is it okay if I link to this post? You're one of my favorite mito mom bloggers.