Sheridan Johnston

Print Friendly, PDF & Email

Sheridan was diagnosed with mitochondrial disease in 2008 after a lifetime of always being “sickly”.

Prior to her diagnosis, she was living a relatively normal life (although filled with many infections and gastrointestinal problems). In 2002, she proudly graduated with her Master’s degree in child development and family relations. After that, she went on to work as a certified child life specialist with cancer patients and their families in Washington D.C, Oklahoma and finally her 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 she passed out and was found to have a extremely high blood pressure and a heart rate nearing 190, showing that clearly something was very wrong. Following this incident, Sheridan’s health took a complete nose dive and she never returned to her job. This began her quest for a diagnosis. It took 2 years and visits with over 30 physicians in 4 states to finally be diagnosed with mitochondrial disease. She felt relief to finally have a name for what was causing her body to fall apart but terrifying to be diagnosed with something that has no cure.

Along the way, Sheridan has gathered many other diagnoses due to the progression of her 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). Her days are now often spent figuring out how much energy she can expend without “paying for it” the next day by being bed-bound by muscle spasms and pain but, she also focuses on living it to the fullest even if it means she has to do it from bed or the couch.

Through MitoAction, Sheridan has made vital connections with other adults fighting mitochondrial disease, which makes her fight that much easier to conquer each day. She frequently explores opportunities to become involved in spreading awareness locally and beyond as well as working 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,” Sheridan said.

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.”