Wilson, who has played Dr. Miranda Bailey on "Grey's Anatomy" for the past 13 seasons, described the uncertainty and fear she faced when her daughter, Sarina McFarlane, 23, first became ill as a teenager.
Wilson said emergency room doctors hydrated her daughter but none of the tests showed it was anything different.
"A month later, the exact same presentation happened and this was month after month after month for 10 months," she said.
Wilson kept a running log of her daughter's symptoms in multiple, 5-inch thick binders to note any progress or changes and to streamline the often-arduous check-in process at hospitals.
"I started looking for patterns," Wilson said. "When you are the parent of someone who is a chronic pain sufferer, you end up creating these binders for all of the hospital stays so you can keep track of every visit and any new thing that comes out."
"Serena was lucky because of the care and persistence of her mother," Boles said. "Most patients go many years without a diagnosis."
"The name gave us a direction to go in," Wilson said of receiving the diagnosis. "And it put us in a community of other people that seriously were going through the exact same thing stage by stage."
Motivated by her daughter's condition, the "Grey's Anatomy" star went one step further and directed an episode that mirrored her own scramble for a diagnosis for this mysterious disease.
"Being able to be on 'Grey's Anatomy' with all of those people able to watch it and hear it and say, 'Oh my God. That's what that is. I've heard of that. That's my kid. That's my husband. That's my aunt,'" Wilson said. "That means so much because I just remember what it meant to us."
She added, "[If] that's something that I can do sitting in this chair on the set, then my daughter has said, 'Go ahead. Go and do that.'"