A swollen stomach made her look pregnant, but the pain — “burning,” “shocking,” “horrible,” “out-of-this world,” as she describes it — was worse than childbirth, leaving her doubled over and gasping for breath. Symptoms came and went, seemingly at random. Vomiting. Constipation. High blood pressure. A racing pulse. Numbness in her hands. Paralysis in her right foot.
Lisa Kehrberg spent several days in a hospital, but every test came back normal. And the doctors began to wonder if perhaps she had been under a lot of stress lately.
As a physician herself — a specialist in pain management, as a matter of fact — Kehrberg knew how to translate that question: “There’s really nothing wrong with you.”
“Actually, no,” she told the doctors. She hadn’t been under stress. “I’m really sick right now. Can you help me?”
“You need to calm down,” one health-care worker told her. “Go home. Take it easy. And pull yourself together.”
Kehrberg had been sick before. The first bout came 22 years ago, when she was going to high school in Bartlesville. Another one hit during college, when she was briefly hospitalized with abdominal pain. But it wasn’t until September 2013, while she was working as a doctor for U.S. Department of Veterans Affairs in Chicago, that Kehrberg finally demanded answers.
Released from one Chicago hospital without a diagnosis, she checked into another one. Did the doctors there think she was a hypochondriac?
“Yeah, I’m sure they did,” she said. “Doctors are too quick to give up. ‘It’s stress.’ ‘It’s your imagination.’ ‘It’s not as bad as you’re saying it is.’ They don’t want to believe that there’s something wrong with you if they don’t know what it is.”
The second hospital did all the usual tests, with the same results. “Normal.” Why not try something different?
“It’s almost a cultural thing for doctors,” she said. “It’s looked down upon to start testing for rare diseases. Nobody wants to look like they’re grasping for answers. ‘It can’t be that, so it must be your imagination.’”
Kehrberg remained undiagnosed until a hospital nurse noticed that her urine had turned dark brown, a classic symptom of a rare genetic disorder called Acute Intermittent Porphyria, by some estimates afflicting less than 0.0001 percent of the population.
Kehrberg had heard of it herself but never considered the possibility. While not curable, the disease can be controlled to some extent by diet and medication.
More than a year later, Kehrberg now speaks as an advocate for people with Porphyria and other rare conditions. And she came back to Oklahoma recently for a fundraiser at her parents’ ranch near Pawhuska.
Her message to patients: “Speak up. Trust your instincts. Demand answers.”
And to physicians: “Listen to people and believe what they are telling you. There aren’t a lot of hypochondriacs walking around out there. There are a lot of sick people who need help.”