As the national media was focused on all the ALS ice-bucket challenges, September was Mitochondrial Disease Awareness month, though few in the national press noticed. So I’m going to do my own meager awareness thing by repeating a portion of my eulogy for Aaron pertaining to the disease. Forgive my indulgence:
The mitochondria are compartments within all the cells of our body, and they create energy. They take fuel and create energy. The little engines of our bodies. They create the energy that allows us to take each breath and put one foot in front of the other. And to climb a jungle gym. Its as simple as that.
And when mitochondria don’t work right, you have mitochondrial disease, which manifests itself in a huge number of ways, across a huge spectrum. At one end, it can be something as innocuous as a full grown otherwise healthy adult who is constantly tired. At the other end of the spectrum, a dysfunction of the mitochondria can cause a child to fail to develop properly. Children after all need huge amounts of internal energy to grow.
There are no good diseases, and certainly no good childhood diseases. But mitochondrial disease in children is particularly insidious because it manifests itself in vastly different ways. You could have 10 children with the diagnosis, with ten different sets of issues. So much so that until recently misdiagnosis was common.
In fact the misconception is that mitochondrial disease is a rare disease. It is not. It was though, at least until recently, rarely diagnosed.
Now the belief is that mitochondrial dysfunctions could be the root cause of a wide range of issues including Alzheimer’s, Parkinson, Lou Gehrig’s disease, multiple sclerosis — all those and others have possible links to Mitochondrial disease. But despite this, few federal dollars go to its research.
That is something only greater public awareness will change.
Ok, off my soapbox. If you want to know more, I point you to this much more detailed article.