Wednesday, September 18, 2013

Actually Aware

I kind of tend to get a little irritated at how the word "aware" gets thrown around as was made evident last October with status updates such as "You can get cancer where?!" and "What are these gray furry things climbing on my tress?". To further explain my viewpoint I wrote a snarky blog post about how "aware" I was of awareness.
Yesterday I was actually made aware of something and wanted to share. This is Mitochondrial Disease Awareness Week (please join me in irritation that this little known nasty only gets a week). Here is a link to the official description with pictures and sciencey stuff. To oversimplify it, Mito keeps your body from using oxygen to make healthy cells. This means your body makes unhealthy cells everywhere. It takes your energy first, then you ability to eat, and eventually one system after another in your body fails.

Now for the bad new. This is by in large a childhood disease. Right now there is no cure or even treatment beyond pain management and an attempt to slow progression, neither of which works consistently. Finding a cure would be unspeakable joy.
Why isn't this something we hear about? Well, the stats run 1 in 4,000 which isn't rare, but also not super common. It takes forever to get diagnosed. It is one of those things where they rule out everything else first and the test for it is not easy. Even if a baby is presenting with problems it can take a year and a half to figure it out.
There is another reason that is a little harder for us to look at. Parents with sick children rarely have time to advocate for awareness of what is killing their child. They are focused on caring for their child and making their life as happy and as full as they possibly can. Often when you hear of a child with cancer, the people raising awareness are the friends and family, not the parents. Here is where it gets ugly. Cancer is a monster that can be fought. The battle is not always won, but it is won often enough to give us hope. Mito is a devouring beast that always ends in loss. Not many are going to sign up voluntarily for that watch. I talked with a mom this week whose daughter is in this fight. She said that the best advocates are sadly the parents in their first year or two of finding out their child has been diagnosed. After that, the parents are tired, the children are tired, and all of their focus has to be on their own family. That was the statement that made me want to post. This disease doesn't get flashy attention. Chances are good that if you didn't look for it, you'd never see a fundraiser or 5k or telethon for Mito. That doesn't mean that money and support are not needed. It means that people don't have the time and energy to ask.
So, now you know. If someone you know has a child with mito you can be ready. Ready to listen. Ready to support. Ready to help raise awareness for them.

1 comment:

Jeannett said...

I'm so sorry this is a part of your life.
Truthfully, I've heard of it..but didn't know what it entailed.
And you're right...there are "pet" causes. Frankly: clean water, orphans, down syndrome, cancer and AIDS. I don't mean that in a bad way...just that those are mostly hot button right now. (And I personally support all of those myself.)
My daughter has epilepsy...and while it certainly garners more attention than Mitochondrial disease, it's pretty pathetic when you consider it affects 1 in 26 AMERICANS. It's just not the "thing" right now. But I have to remember that not everything can be. And I'm just glad that something is the thing.
That being said, FB awareness is the worst. I could go on and on but I won't. I wish that was somehow against FB policies and immediately deleted your account if you shared the color of your bra as if that meant anything. Grrrrrr...
Hang in there mama.