Wednesday, September 14, 2011

A Favor & {Mito Fact a Day} Days 8-14 Expanded Version

As I shared in my last post (Days 1-7), I have been sharing a “Fact a Day” over on Face Book as part of my efforts this month to raise awareness of Mitochondrial Disease, and wanted to share it here too. 

8. The affected individual is at highest risk for neurological and organ damage during and for the two weeks following an illness.  Therefore even a simple flu or cold virus can have devastating effects on the patient, even death.  Any illness must be treated immediately with medical interventions, like IV fluids and IV antibiotics.  

Take a moment…let that sink in. 

Now, imagine knowing that information and trying to balance living with attempting to protect your child from the thing that is most likely to cause them harm.  It’s crazy!!  I suspect there have been times when those that love us have wondered why we worry about illness…..every day illnesses….as much as we do.  I mean really, a cold?  What’s a cold going to do to them? 

The thing is, it’s impossible to know when one of those every day illnesses might leave their mark.  The kids have had their fair share of them and, while most have come and gone without a tangible impact, some have, and those are the ones we are so avidly attempting to avoid.  And still live life.

9. Every 30 minutes, a child is born who will develop a mitochondrial disease by age 10.

10. Each year, 1000 to 4000 children in the United states are born with a mitochondrial disease. Half will develop the disease before their 5th birthday. & other

11. While exact numbers of children and adults suffering from mitochondrial disease are hard to determine because so many people who suffer from mitochondrial disease are frequently misdiagnosed, we now know the disease is approaching the frequency of childhood cancers.

12. Many with Mitochondrial Disease are misdiagnosed with atypical cerebral palsy, various seizure disorders, childhood diseases and diseases of aging.  Still others aren't diagnosed until after death.

The “4000 a year” number is the one most quoted, which means 12 a day….84 a week…360 a month will develop Mitochondrial Disease.  And that’s only the ones correctly diagnosed!!  That number could be much, much higher. 

13. Mitochondria are necessary in the body to sustain life and support growth.

14. Mitochondrial failure causes cell injury that leads to cell death. When multiple organ cells die there is organ failure.


September 18-24 is Mitochondrial Disease Awareness Week….and I have a favor to ask.

Could you, would you turn, Face Book and your place on the web GREEN for the week…or even a day?  Add an awareness ribbon….feel free to direct people here if they ask more about it….or even share your relationship with us and how Mito impacts you through us.

Think of this as our pebble in the pond….I have tossed it in and I am asking you to help make the ripple created reach further and further out.  Awareness is our only hope for a cure….for better treatments…..for life!!

It would mean the world to me… all of us!!!

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