Sunday, September 20, 2015

Mitochondrial Disease Awareness Week 2015

Mitochondrial Disease Awareness Week is celebrated globally during the third week of September every year. The dates for this year are September 20th-26th. Every year people come together to bring awareness to this awful disease.

Here's some facts:

  • Mitochondrial Disease never presents itself the same way. Even two siblings both who have the disease can have entirely different symptoms in how the disease presents itself. 
  • Mitochondrial Disease is just as common as childhood cancer, yet the in the case of mito, there isn't a treatment protocol, no cure rate, only a handful of specialists, and very little awareness.
  • There is no reliable or consistent means of diagnosis.
  • Mitochondrial Disease is an inherited chronic illness that can be presented at birth or a patient may develop later on in life. Anyone at an age and develop the disease.
  • Every 30 minutes, a child is born who will develop Mitochondrial Disease by the age of 10.
  • The NIH (National Institute of Health) only devotes $11 million dollars to Mitochondrial Disease research a year.
  • Mitochondrial Disfunction is linked to Type 2 Diabetes, Alzheimer's, ALS, and Parkinson's Disease.
  • Mitochondria produce 90% of the energy your body needs to function.

Last year during awareness week I wrote this and it still rings true today:

I can sit here and tell you all the awful statistics and facts about Mitochondrial Disease and how it rips families apart but that would mean nothing unless you actually experience Mitochondrial Disease for yourself. Mito is like taking out your car battery and replacing it with two double AA batteries. It's obviously not going to function well and becomes overworked very quickly. That is similar to what a person who has Mitochondrial Disease feels like. Organs failing right in front of your eyes. Being told your child has a rare disease and you can do nothing about it. No treatment. No cure. Watching your child suffer in a world full of pain and fatigue. Having their bodies basically shutdown in front of your eyes. Holding them while they scream in pain. Telling them that everything will be okay and the pain will go away soon...but will it? Having to tell your child's brothers and sisters that their sister or brother will be going to heaven soon.The fear in their eyes and the pain the experience everyday. A Mom and a Dad thankful that their child survived the night. Another family grieving the loss of their child. Mitochondrial Disease is real and this is a reality for so many families battling this disease every day. Currently, there is no treatment and no cure. One day we will find one but that cure needs to come soon.

This year my sister and I have chosen to pass around ribbons and little business cards around school to help spread awareness and hopefully spark some interest and much needed awareness to this disease that has robbed myself and my brother of so much. Mito has caused our digestive tracts to fail which means we require IV nutrition to keep us alive. And that's only the beginning.

During Mitochondrial Disease Awareness Week and every week during the year wear green, tell some facts, share a ribbon, and raise awareness. I don't have an escape. This is my reality 24/7.  While you might be able to turn the other cheek and pretend the disease doesn't exist my family and thousands of other families will never be able to do the same.

"Some say I'm crazy and obsessed. I call it making a difference. I know what I am doing is right and that's all that matters. You can either support me or choose to look the other way. It's your choice. Either way I won't stop making a difference in this world."

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