This is a chronicle our everyday life as we live, laugh and love raising our teenager, our toddler and our special needs baby. Normal isn't always what it seems...

Saturday, June 29, 2013

A "simple" explanation of Mito

I found this on a blog from the UMDF and thought it made a lot of sense for those that haven't really understood Lydons disease.

What Is Mitochondrial Disease and How Do You Explain it?

I often get asked for a simple definition.  Okay so here it is; mitochondrial disease occurs when the body cannot produce enough energy to sustain life. Of course this is sort of like saying the earthquake that caused the domino disasters in Japan is the result of an acorn that fell off an oak tree in San Diego.
Mitochondrial Disease is like:
  • Replacing your car battery with two Double “A” Energizers and wondering why it won’t start. But your car still looks pretty good, that is until it begins to rust from inactivity.
  • Trying to supply the electrical requirements of Los Angeles (pop. 3.7 million) with the one electrical plant in Ranchester Wyoming (pop. 701).
  • Swimming against Olympian, 8 Gold Medal winner, Michael Phelps, and you’re pool is filled with molasses.
  • That dream you have where you are trying to run away from danger but you just can’t move? Yep, that’s mitochondrial disease.
  • The way you feel after running a 50 yard dash compared to the way you feel after running a 50 yard dash with a 50 pound knapsack on your back.
  • The way you feel after working an 18 hour day or 18 days without a day off. Well, if you had a mitochondrial disease you’d probably feel that way after breakfast.
  • Buying a perfectly good Volkswagen Beetle with a 110 horsepower engine.  It’s a great looking car and it runs terrific.  Now take out a ring, gum up the valves, add some sugar to the gas tank and put in an old head gasket.  The car still looks great but now it will only generate about 50 horsepower.  That will get the Volkswagen around the flat streets of Kansas on a spring day, but now load it up with 3 of your hefty friends, or more if they’ll fit, with a trunk full of luggage and take it to the hills of Western Pennsylvania on a 90’ day.  It won’t make it!  But it still looks great!

Are you getting the idea? And by the way, all these examples are fixable; mitochondrial disease isn’t.

     Diseases of the mitochondria appear to cause the most damage to cells of the brain, heart, liver, skeletal muscles, kidney and the endocrine and respiratory systems.

     Depending on which cells are affected, symptoms may include loss of motor control, muscle weakness and pain, gastro-intestinal disorders and swallowing difficulties, poor growth, cardiac disease, liver disease, diabetes, respiratory complications, seizures, visual/hearing problems, lactic acidosis, developmental delays and susceptibility to infection

     I hope this makes it easier to understand why Lydon "looks so great" and still needs to wear oxygen , receive fluids every night, struggle with vomiting and stomach pain and needs so many meds on a daily basis. He deals with most of the symptoms listed above. Thank goodness he currently does not have all of them!  

1 comment:

  1. It seems reading this that it is an auto immune disease? These seem to run in our family, my mother was diagnosed with lupus and I have hashimotos. You are doing a wonderful job with him I would never have guessed your family is going through so much with the smile you always wear, keep it up. Love you all!