Mitochondrial Disease is a chronic genetic disorder that occurs when the mitochondria of the cell fail to produce enough energy for cell function.
“Mito” affects the four of us in similar ways; each of us has a different level of severity. Our daily health often fluctuates depending on the energy we have and what is going on in our lives. A common cold/virus makes us sicker than healthy people and lasts longer, leaving our bodies more susceptible to the next virus.
Our symptoms include muscle coordination/weakness, fatigue, neurological problems, sleep apnea, migraines, visual and hearing losses, learning disabilities, heart disease, vascular instability, gastrointestinal issues, thyroid dysfunction, autonomic dysfunction, chronic anemia, and osteoporosis.
Our home is our base medical camp where our support staff helps manage our multiple medications, IV fluids, G-tube feeds, pumps. They also oversee medication schedules to ensure no drug interactions.
With mitochondrial disease, acute issues are not always easily understood and it takes the different specialists to try to figure out what has happened and how to make it better. To manage our symptoms we see specialists regularly; often one or two trips to Boston per week. We have IV hydration infusions at our local hospital’s Hemoc Clinic, IV iron infusions at Tufts New England Medical Center’s Pediatric Hemoc Clinic; and IV osteoporosis infusions at Massachusetts General Hospital. All this is done to keep us as healthy as possible and able to enjoy each day to the fullest.