September 15th- 21st 2019 is Mitochondrial Disease Awareness Week, a time when I flood your Facebook news feed with random facts about Mito and green ribbon images. But awareness week is about more than making sure people know the name "Mitochondrial Disease". It's about advocating for the entire Mitochondrial Disease community.
Unlike most diseases that have an official awareness month, we only have one week- But that doesn't stop us from acting as if September is our awareness month. Mitochondrial Disease isn't some big name disease that everyone has heard of before like cancer or Alzheimer's, but that doesn't mean that this disease is any less important.
You may be thinking "what exactly is Mitochondrial Disease?" and the simple answer is that it is a group of genetic diseases that causes the mitochondria in our body to not create enough energy for our cells to work properly. Our cells become very damaged which causes all or organ systems to become affected. It is a progressive disease and there is no cure. Some people are very affected when they are born and others are mildly affected but continue to get worse the older they become. 1 in 4,000 individuals in the United States have a Mitochondrial Disease.
During Mitochondrial Disease awareness week, we all step up. We raise money for research. We write to state reps and senators telling them what the Mitochondrial Disease community needs. We educate people on what Mitochondrial Disease is. We advocate for change.
Most people have never heard of Mitochondrial Disease- and if they have, they don't know much about it. The majority of doctors don't know how to treat me. Mitochondrial Disease is a disease that doctors briefly learn about in medical school and rarely ever see a patient with. Because all my organ systems are affected, I have over a dozen specialists and it wasn't easy finding a good one. I constantly hear "I've never had a Mito patient before" or "I don't know how to treat you. Try a bigger hospital." which is always discouraging. On many occasions, I've had registered nurses tell me that they have never even heard of Mitochondrial Disease. How are we supposed to get help when no one knows how to help us ?
So awareness week isn't just Mito facts and green ribbons. Its the time when we make sure we are heard. It's the time when we try to make change happen.