Sunday, September 21, 2014

Mitochondrial Disease... What's That?

Source: Saving Savannah Facebook Page

Mitochondrial disease awareness week is almost over for 2014 and I have been quiet throughout although I've read through every last post on my feed about it, looked at every picture, watched every video, and prayed over every person who has asked for prayers. I have cried over the losses, so many losses, of people who battled this disease and died because of it. Yet still I have been quiet. Not because it doesn't matter to me, but rather because it matters so much that I didn't know how to add my shaky small hurting voice to the choir of voices speaking out. Tonight though I'm digging to find those words because awareness is so key to the fight against mitochondrial disease.

What is Mitochondrial Disease you are probably asking... That's fair, most people have never heard of it even though it is present as frequently in children as cystic fibrosis as well as almost as frequently as all pediatric cancer types combined.

Mitochondria are the batteries of our body. They provide the energy and in people with mitochondrial disease they are not able to adequately turn oxygen and food that is taken into the body into energy. This can cause symptoms in any area at all of the body and is often misdiagnosed as other diseases or syndromes first because of the vast spectrum of symptoms that can present such as developmental delay, liver or kidney disease, poor growth, recurrent infections, lung disease, apnea, migraines, and many many more.

There is no cure for mitochondrial disease. In some babies symptoms are present from birth, some children are older when they start showing symptoms and sometimes it is not triggered until adulthood. Every 30 minutes someone is born who will develop mitochondrial disease by the age of ten. Every.thirty.minutes. Because it is genetic it can effect whole families, sometimes the diagnosis of one person will lead to diagnosis in others where previously symptoms had be undiagnosed or misdiagnosed.

There are parents losing their children, children losing their parents, siblings losing their siblings... Every single day. I didn't know what I didn't know until I became friends with someone who has mito, and knowing that at any time I could lose her to this awful disease is part of the reason my heart is full of hurt when I hear the words mitochondrial disease. Since learning about mito I've made friends with others who are living with mitochondrial disease in themselves or their children and even in the short three years it's been on my radar I've cried over more losses than can ever possibly be fair or reasonable.

Three years ago I'd never even heard of mito, now I love multiple people with it, and we now know that it has become a diagnosis of likely hood within our own house. We are facing the testing for answers that we aren't even sure we want but no answers just means that we can't fight effectively without knowing the name of the opponent.

Please if you are reading this take some time to learn a little bit more about mitochondrial disease. I'll include some links at the end. Please donate if you can to research into finding a cure. Please share and make others aware. Put faces to this disease that is still not well understood by nearly enough medical professionals which hinders the care of those who are living with mito. Please pray if you do, or send positive thoughts and lift up those of us who are at any point in the timeline of prediagnosis through to grief after losing a loved one.

Also please take the time to watch this video put together by Saving Savannah (you can find them on Facebook!). Its not an easy video to watch but it's even less easy to be a family living it.

More Links: (United Mitochondrial Disease Foundation)