Teen's mystery illness solved: "It took 18 years to get an answer"
Lucia Adarve had a long list of symptoms that no one could diagnose. Her mother Lisa was determined to find an answer.
At 18, Lucia Adarve had been to more doctors than most people see in a lifetime. Things had been complicated for her since birth: She missed milestones, had seizures that led to collapses and concussions, and struggled with communication and schoolwork. She had a hard time balancing and reacted poorly to stimuli like loud noises or bright lights.
Her mother, Lisa, was determined to find out what was wrong. Over the years, Lucia amassed a long list of diagnoses, including epilepsy , lupus , fibromyalgia, ADHD and dyslexia. But no label fully aligned with her symptoms, and no therapies or treatments seemed to help.
"Her stack of medical records was getting bigger and bigger," said Lisa. "I thought, 'There's no way this one child has all of these labels and issues. There has to be something underlying.'"
Lucia's condition upended her life from an early age. After she failed to thrive at multiple schools, Lisa, a former Montessori teacher, began homeschooling her in third grade. In addition to teaching Lucia a standard curriculum, she came up with out-of-the-box solutions, like teaching her to knit to develop fine motor skills and taking her horseback riding to improve her balance.
The efforts expanded outside the classroom. Lucia's siblings liked to climb over a wall in the backyard to play in the woods around their home. Lisa propped up a ladder that Lucia could climb, and made the other kids use it too.
Despite her family's support, the circumstances took a toll on Lucia. She experienced fainting spells that sometimes led to concussions and injuries, and occasionally had anemia. She became pessimistic about appointments and proposed therapies, and while she loved her family, she was most likely to spend time with her service dog.