UNMC program coordinator highlights a special case

Many patients and their families may start to feel that they know as much about the health conditions that affect them as the experts do. After all, they are living it.

Could they even give a poster presentation on the subject?

Emily Wiley recently found herself doing this very thing.

Wiley works at the UNMC College of Allied Health Professions, but not as a clinician or researcher. She is education program coordinator II in the medical laboratory science program.

“I’m usually the one taking meeting minutes, organizing calendars, doing room scheduling,” she said. Those are important, but Wiley is used to contributing to science in a supportive role.

She’s also held interesting jobs at Omaha’s Henry Doorly Zoo and Aquarium and at the Nebraska Department of Correctional Services, where she worked as a canine corporal with dogs who worked there.

But it’s the faculty she works with at the UNMC College of Allied Health Professions who are the ones who make presentations at scientific conferences.

And yet Wiley just recently returned from the American Society for Clinical Laboratory Science, Missouri’s annual meeting and conference, where she was an invited speaker on “Hemophilia A in Canines.”

Yes – plot twist – the loved one whose health condition she has become expert in is her dog, Walter.

The Omaha World-Herald recently wrote about how Wiley was hoping Walter could enroll in a clinical trial for gene therapy for this extremely rare condition. The website hemophiliahounds.org tells more about this condition and the prospective clinical trial. Walter is featured on that site as one of the dogs living with Hemophilia A and waiting for a chance to receive gene therapy via a prospective clinical trial.

Gene therapy looks promising. The medical center administered gene therapy to a human Hemophilia B patient for the first time just a few months ago.

Wiley was on the phone with a colleague from a collaborative institution; UNMC’s medical laboratory science program, like a handful of allied health professions programs, also educates students at other sites and institutions. Small talk turned to Walter’s health journey.

“She was like, ‘Wait, wait, wait. Tell me more.’”

The colleague thought Walter’s case would make a great presentation, a different perspective that would be well-received by conference goers. Would she consider giving a talk at the upcoming meeting?

She balked at first.

“I don’t have any credentials,” Wiley said. “I just work here.”

But she knew Walter’s case inside and out. So, she asked the colleague who asked her, and the vet coordinating the prospective clinical trial, to collaborate on the talk. And she presented from the perspective of a pet owner, discussing the clinical signs and common presentations of the disease. She described his spontaneous bleed events, the treatments and eventual diagnosis of the rare condition.

The talk also touched on comparing lab values for canine and human patients, the lab testing methodologies used to diagnose Hemophilia A in canines and the potential for gene therapy.

“Something I didn’t anticipate being up there and talking about it in front of people,” Wiley said, “was, I was kind of reliving each of our emergency room visits and reliving somebody telling me that my dog’s not going to make it.

“So, I got emotional a couple of times, which I didn’t think would happen.”

The science and the emotion were both well received by scientists. And Walter, who didn’t go because he gets carsick, received his own conference attendee badge.

As for Walter, “He doesn’t know that he’s breakable or sick. He’s just loving and goofy,” Wiley said.

Wiley continues to work toward educating veterinarians on Hemophilia A in canines, because the condition is so rare they might not immediately recognize it, as well as families in hopes that the clinical trial will happen. She hopes what is learned will help Walter and other dogs in the future.