Awareness of Mitochondrial Disease

To the Editor,

 

I’m writing to help spread awareness of mitochondrial disease, a chronic genetic disorder that affects about 1 in 4,000 people in the United States. I am one of them.

 

There are many forms of this disease, which also has links to Alzheimer’s disease, Parkinson’s disease, type 2 diabetes, heart disease, stroke, and cancer. As you can guess, a lot of people and families are affected by mitochondrial disease. Every moment and every dollar spent on research matters greatly.

 

I was born in 1994 and was often sick, so my parents took me to a lot of doctors to figure out what was happening. When I was 7, I was diagnosed at Strong Memorial Hospital in Rochester with mitochondrial disease, cerebellar atrophy, and abstract seizure disorder.

 

Mitochondrial disease is inherited from the mother. It’s difficult to diagnose and it acts in different ways with different people. Basically, the mitochondria of our cells don’t produce enough energy for the cells or organs to function properly. Treatment so far includes a “cocktail” of vitamins, supplements, and medicines that can help our bodies improve energy. For example, I take vitamins and supplements to produce energy, metabolize carbs and proteins, convert fat to energy, and protect against free radicals. I also take medication for seizures and tremors.

 

If someone you know is diagnosed with mitochondrial disease, remember that aqua therapy is not good for them because swimmers use every muscle in their bodies. Swimming is one of the most metabolically demanding activities you can do. When getting out of the water, your body feels 1,000 pounds heavier.

 

I am very thankful to my parents and I love them very much. As for the future, I hope to be an advocate for this disease so that people like me, and their families, may get a cure or new treatment. At the very least, I hope for people to be aware of this disease and what it’s like to live with.

 

For more information, look online at www.slnysarc.org.

 

Christopher Shayne Leonard