I was diagnosed with mitochondrial disease in 2008 after a lifetime of always being “sickly”. “Mito” is an inherited chronic illness that occurs when the mitochondria of the cells in the body fail to produce enough energy for the cell to function properly which leads to organ damage and failure. Mitochondrial disease is progressive and has no cure.
Prior to my diagnosis, I was able to live a relatively normal life (although filled with many infections and gastrointestinal problems). In 2002, I proudly graduated with my Master’s degree in child development and family relations. I went on to work as a certified child life specialist with cancer patients and their families in Washington D.C, Oklahoma and finally my dream job at St. Jude Children’s Research Hospital in Memphis, TN. It was following an intervention with a patient one afternoon in 2006 that I passed out and was found to have a extremely high blood pressure and a heart rate nearing 190, clearly something was wrong. Following this incident my health took a complete nose dive and I never returned to my job. My quest for a diagnosis began. It took 2 years and visits with over 30 physicians in 4 states to finally be diagnosed with mitochondrial disease. It was a relief to finally have a name for what was causing my body to fall apart but terrifying to be diagnosed with something that has no cure.
The past 12 years I have gathered many other diagnoses due to the progression of my mitochondrial disease including gastroparesis (the paralyzation of my stomach), dysautonomia(dysfunction of the autonomic nervous system- the part of our nervous system that regulates out heart rate, blood pressure and temperature regulation) and dystonia (a movement disorder that causes my muscles to contort and contract involuntarily into painful positions). My days are often about figuring out how much energy I can expend without causing myself to pay for it the next day by being bed-bound by muscle spasms and pain but they are also about living it to the fullest even if it means I have to do it from bed or the couch.
MitoAction is a nonprofit organization founded in 2005 by patients, parents and Boston hospital healthcare leaders who had a vision of improving the quality of life for children and adults with mitochondrial disease. It’s mission is to make a measurable impact on the lives of those affected by mito through support, education, outreach, advocacy, and clinical research initiatives. Through MitoAction I have made vital connections with other adults fighting mitochondrial disease, which makes this fight that much easier to conquer each day. I have also begun to explore opportunities to become involved in spreading awareness locally and beyond as well as work with the organization to encourage our state senators to better understand the plight of our patients and others like us fighting a rare disease. MitoAction truly is an organization that goes above and beyond for its patients and I would like to find a small way to do my part as well.
It took me years to realize that being disabled didn’t have to diminish the impact I have in this world. I can still be the strong advocate I worked so hard at being as a child life specialist, I just have to do it in a bit more creative way. I try to bring awareness to mitochondrial disease wherever and whenever I can and hope that one day we will find a cure.
– Sheridan Johnston