May 14, 2009
I am 52 yrs old. I have a rare Mitochondrial Disease that I would like to share. Mito... what? This is what I am always asked when I try to tell someone what I have. Can you spell that? Again? How did you say that?
For the ones that don't know what this is, I will first try to explain what Mitochondrial Disease is before I start on my experience with this Mito...
Mitochondria exist in nearly every cell in the human body, producing 90% of the energy the body needs to function. There are a lot of different mitochondrial disorders that cause the mitochondria to fail for some reason or other and therefore cannot convert the food we eat and the oxygen we breathe into the energy the body needs to live. This disease can be an inherited genetic condition, while for others the mitochondria can be affected by other enviromental factors.
This disease affects the parts of the body that need the most energy to function correctly, such as the heart, brain, muscles and lungs. The affected individual may have strokes, seizures, intestinal problems, blindness, deafness, muscle failure, heat/cold intolerance, immune system problems, etc. When a person gets ill with a cold, flu, etc. they need to get the proper care right away as it will take them at least twice as long to fully recover. If not treated in time, it could result in a downfall (kidney, liver or brain damage,) from where they were before this illness hit. This person may never be the same as before the illness, death could even occur.
There is no cure for this disease yet, but research is always being done to hopefully find one. There are medications and vitamins that are used to help treat the symptoms right now. People with this disease can live almost normal lives for years, or prgression of the disease could be short. This is mostly known as a child's disease, because a lot of babies born with a mitochondrial disease do not live long enough to become adults.
Just in the last 15 to 20 years have doctors starting connecting a Mitocondrial Disease with Parkinsons and Alzheimers, and other adults that had been suffering for years with a wrong diagnosis were found to have a
Mitochondrial Disease. Some doctors are still reluctant to talk about this as a disease or even look into it for you. You just have to keep looking for the right doctor for you.
Now that I have explained what Mitochondrial Disease is, I do have my story to tell but I am going to have continue tomorrow.