Even though April had all the clinical signs of schizophrenia, the team believed that the underlying cause was lupus, a complex autoimmune disorder where the immune system turns on its own body, producing many antibodies that attack the skin, joints, kidneys or other organs. But April’s symptoms weren’t typical, and there were no obvious external signs of the disease; the lupus appeared to only be affecting her brain.
The autoimmune disease, it seemed, was a specific biological cause — and potential treatment target — for the neuropsychiatric problems April faced. (Whether her earlier trauma had triggered the disease or was unrelated to her condition wasn’t clear.)
The diagnosis made Markx wonder how many other patients like April had been missed and written off as untreatable.
“We don’t know how many of these people are out there,” Markx said. “But we have one person sitting in front of us, and we have to help her.”
The medical team set to work counteracting April’s rampaging immune system and started April on an intensive immunotherapy treatment for neuropsychiatric lupus. Every month for six months, April would receive short, but powerful “pulses” of intravenous steroids for five days, plus a single dose of cyclophosphamide, a heavy-duty immunosuppressive drug typically used in chemotherapy and borrowed from the field of oncology. She was also treated with rituximab, a drug initially developed for lymphoma.
The regimen is grueling, requiring a month-long break between each of the six rounds to allow the immune system to recover. But April started showing signs of improvementalmost immediately.
As part of a standard cognitive test known as the Montreal Cognitive Assessment (MoCA), she was asked to draw a clock — a common way to assess cognitive impairment. Before the treatment, she tested at the level of a dementia patient, drawing indecipherable scribbles.
But within the first two rounds of treatment, she was able to draw half a clock — as if one half of her brain was coming back online, Markx said.
Following the third round of treatment a month later, the clock looked almost perfect.
Drawing a clock is a common way to assess cognitive impairment. These clocks, drawn by April, show how significantly the treatment regimen was helping her. (Courtesy of Sander Markx)
Despite this improvement, her psychosis remained. As a result, some members of the team wanted to transfer April back to Pilgrim Psychiatric Center, Markx said. At the time, Markx had to travel home to the Netherlands, and feared that in his absence, April would be returned to Pilgrim.
On the day Markx was scheduled to fly out, he entered the hospital one last time to check on his patient, who he typically found sitting in the dining room in her catatonic state.
But when Markx walked in, April didn’t seem to be there. Instead, he saw another woman sitting in the room.
“It didn’t look like the person I had known for 20 years and had seen so impaired,” Markx said. “And then I look a little closer, and I’m like, ‘Holy s---. It’s her.’”
It was as if April had awakened after more than 20 years.
A catatonic woman awakened after 20 years. Her story may change psychiatry.
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