Partners in practice: UNM neurosurgeon and patient fight rare genetic condition
Editor's note: This is the first story in a three-part series exploring the lifelong bonds that can form between UNM physicians and patients when they meet in a moment of crisis.
One morning in May 2008, Candelaria Romero started having trouble with her balance at work. “I didn’t feel well,” she recalls. “I told the girl I work with, ‘I can barely walk.’ They took me to the emergency room and I said, ‘I’m here to see Dr. Yonas.’”
Howard Yonas, MD, is chair of UNM’s Department of Neurosurgery. For two years he had regularly seen Romero to track cavernous angiomas — small tangles of leaky blood vessels in her brain. Romero knew she had inherited a genetic condition unique to New Mexico Hispanics that leads to these dangerous brain lesions.
Yonas knew that Romero’s symptoms were only likely to worsen. “They’re like mulberries, little purplish ovulated mulberries,” he says. “People are born with them in their brain. They tend to ooze and bleed and grow.”
After waiting a few days for the swelling to subside, Yonas performed delicate surgery at the base of her brain to excise the swollen blood vessels.
“The trick with microsurgical techniques is to work within the cavernoma margin,” Yonas says matter-of-factly. “We were able to do that.”
Afterward, Romero was able to wiggle her fingers and toes, a sign the surgery had been a success. But she still faced six months of rehabilitation to overcome trauma to her brain that had caused partial paralysis on her left side. She has since returned to work, kept up her fitness routine and even traveled abroad.
Romero is passionate about educating other New Mexicans about the risk of the disease. She is also participating in research led by Leslie Morrison, MD, a professor in the Department of Neurology and vice chancellor for academic affairs at the UNM Health Sciences Center.
“We have the only very large population of patients with cerebral cavernous malformations that are familial in the world,” Morrison says. “We are pretty sure this is something called a ‘founder effect.’ At some point, apparently after the Spaniards who settled in New Mexico came to the New World, there was a mutation on a particular gene. It happened centuries ago.”
The mutation means carriers have a 50-50 chance of passing it on to their offspring, she says. And because the effects of these slow-growing angiomas are often not felt until adulthood, the mutation has been passed from one generation to the next for hundreds of years.
Yonas, who performs an angioma surgery every few weeks, won Romero’s confidence right away. “Every case is a relationship,” he says. “You’re building a bond with another person, and you’re trying to give them a chance to live.”
Romero regularly checks in with Yonas to make sure she isn’t developing new brain lesions and keeps up her daily workouts.
“I believe that if you teach your body to do something, it will do that,” she says. “God is so good. He just gives us the tools and we need to use them. Dr. Yonas is one of his tools.”