“I’ve had to accept that I may not be able to keep the house as clean as I would like or cook as much as I might want. It’s been a journey of acceptance.”

It’s possible that Kristi Dellinger has mitochondrial disease – she’s just not sure.

It wasn’t until five years ago that she even heard the term. She dealt with unexplained health issues her entire life, beginning with failure to thrive as a baby and continuing with fatigue through middle and high school. Despite all of that, she still managed to run division III cross country in college. It wasn’t until after she left college that her medical issues became more problematic. That is when mitochondrial disease as a cause was suggested. It also began her own diagnostic journey. “I was instructed to start CoQ10, with the suggestion that if it was mito it might help and wouldn’t hurt in any situation. It was a game changer,” she said.

Suddenly, Kristi had more energy. Based on her symptoms and her response to CoQ10, she received a clinical diagnosis of mitochondrial disease; but her diagnostic journey was far from over.

Getting a genetic diagnosis is important for Kristi. To do so would allow her to participate in clinical trials. Despite following her physician’s directives, her muscle weakness returned, especially when she increased her activity; and this made her want a genetic diagnosis even more. “The genetic testing turned up more questions than answers,” Kristi said. “I’ve more recently had a muscle biopsy with the hopes that it will give them more information to rerun the genetics. They are also going to rerun it with my parents’ DNA. In the meantime, we treat symptoms as they come up.”

While Kristi’s diagnostic odyssey continues, she works hard at balancing the realities of her illness with everyday life. She worked from home years before the COVID-19 pandemic. As a senior consultant for an IT business consulting firm, Kristi has a heavy travel schedule to client locations. As an affected adult, the travel takes a toll on her. “At one point with this job, I was traveling 3-4 days a week every other week.” Kristi said. “I would drive out to the client’s location on Sunday afternoon or Monday morning and drive back home Wednesday or Thursday afternoon. Those were a rough few months for my body. On the weekends, I rarely did much of anything as I recouped from the travel.” She finds that when challenges on the job confront her, it’s best to be upfront and honest about her mitochondrial disease, because it prepares people for problems she may have; and it spreads awareness. When she is not working, Kristi’s company, CGI, allows her to volunteer her IT and support services to UMDF. Professionally, Kristi uses her expertise to help UMDF with database management and help with our communications and fundraising platforms. Her countless hours of help are provided through CGI on a pro bono basis.

Kristi recently took the step of getting a wheel chair, since it makes traveling for work easier and allows her to conserve some of her energy that she uses to help her clients solve their problems. While traveling in a wheelchair takes more preparation, it gives her the confidence in knowing that she will not have an energy crash in a strange airport. “I’ve had that happen, and it’s terrifying to be alone and trying to navigate around an unfamiliar airport without causing alarm,” she said. However, since the COVID-19 pandemic hit, Kristi’s travel schedule has diminished. “My wheelchair has been very lonely; I do not use it in the house, and I am not going anywhere,” she added.

Kristi and her husband, Dave, recently moved into a new home that places everything she needs on one floor. She says having a work life balance with mitochondrial disease is always a juggling act. “I’ve had to accept that I may not be able to keep the house as clean as I would like or cook as much as I might want. It’s been a journey of acceptance.” What she wants most is an accurate diagnosis. “When you live in the world of possible, maybes and suspected, it can be really hard to get treatment with new physicians,” Kristi said. “If it’s not mito, but we still get a confirmed diagnosis, that will be a good thing. It might even be something with a cure or a treatment. It might not, but it would at least be concrete and remove the mystery.”