Constable: What made Schaumburg woman catatonic? A rare disease misdiagnosed as mental illness

  • Life is up for grabs for Paul Braker as he works to help his wife, April, recover from a rare autoimmune disease called anti-NMDA receptor encephalitis. The disease, often misdiagnosed as a mental breakdown, has April in a catatonic state with no guarantees about when or how she will recover.

      Life is up for grabs for Paul Braker as he works to help his wife, April, recover from a rare autoimmune disease called anti-NMDA receptor encephalitis. The disease, often misdiagnosed as a mental breakdown, has April in a catatonic state with no guarantees about when or how she will recover. Steve Lundy | Staff Photographer

  • While she has backpacked in far-off places such as New Zealand and Iceland, April Braker of Schaumburg also enjoys nearby Starved Rock State Park, where she and her husband, Paul, can bring their dog, Moses.

    While she has backpacked in far-off places such as New Zealand and Iceland, April Braker of Schaumburg also enjoys nearby Starved Rock State Park, where she and her husband, Paul, can bring their dog, Moses. courtesy of Paul Braker

  • Always up for a backpacking adventure, Paul and April Braker of Schaumburg enjoyed this trip to Iceland.

    Always up for a backpacking adventure, Paul and April Braker of Schaumburg enjoyed this trip to Iceland. courtesy of Paul Braker

  • An avid traveler before she met her like-minded husband, Paul, April Braker now is fighting a rare autoimmune disease that has her in a catatonic state.

    An avid traveler before she met her like-minded husband, Paul, April Braker now is fighting a rare autoimmune disease that has her in a catatonic state. courtesy of Paul Braker

 
 
Updated 7/8/2018 10:46 AM

Behind those once-bright eyes of that catatonic woman staring off into the space of her hospital room hides the vivacious wife Paul Braker loves.

When and how April Kay Braker will emerge from her unresponsive state is as much of a mystery as the strange circumstances that put her there -- a rare disease that causes a body's immune system to attack the brain and often is misdiagnosed as a mental illness.

                                                                                                                                                                                                                       
 

"She's young, motivated and has a smile and personality that is hard to resist," Paul says of his 30-year-old wife, who grew up in the Philippines. Hundreds of photographs show the energetic Schaumburg couple hiking through Iceland, Utah and nearby Starved Rock State Park, where they can bring along Moses, their chocolate-colored standard poodle. Working on her master's degree to become a nurse practitioner, April recently started a new job as an emergency room nurse at Chicago's Rush Medical Center and wasn't about to let a headache and fever slow her down during the last week of April.

Married since 2011 and drawn together in part by their love of travel and adventure, Paul and April Braker of Schaumburg have backpacked on several continents, including this trip to Utah.
Married since 2011 and drawn together in part by their love of travel and adventure, Paul and April Braker of Schaumburg have backpacked on several continents, including this trip to Utah. - courtesy of Paul Braker

But something wasn't right. While walking Moses, April couldn't remember the path they took.

"She knew something was wrong with her brain," says Paul, showing a text his wife sent him on May 1 speculating that she might have meningitis. Nothing abnormal turned up in a CT scan and blood work during a May 6 visit to the emergency room, and they were told that stress might be the culprit.

"She woke up the next morning and she was hysterical. She thought she was going to die," her husband remembers.

Generally calm and upbeat, April became agitated and paranoid. "You drugged me," she yelled at her husband.

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"She was begging me not to kill her," Paul says, his voice catching at the memory. "She asked how much I was getting paid. It was traumatizing, having to hold her down and say, 'You're sick.'"

April ended up in the neurological unit at Alexian Brothers Medical Center in Elk Grove Village, where she had once worked as an ER nurse.

Blood tests and scans still found no abnormalities. By May 9, April was slurring her words and often unresponsive.

A spinal tap revealed an infection. April had trouble breathing and her vital signs crashed.

"They saved her life right in front of me," Paul says, explaining how they inserted a breathing tube.

Paul's brother, Daniel, came across a new Netflix movie titled "Brain On Fire," a true-life story of a woman with similar symptoms. "Is this a possibility?" he asked. Paul reached out to April's friends in the medical field.

                                                                                                                                                                                                                       
 
After April Braker, left, developed odd symptoms that included psychotic behavior, her friend Dr. Kandy Sandhu, right, correctly suggested that Braker had anti-NMDA receptor encephalitis, a rare disease where her immune system attacks her brain.
After April Braker, left, developed odd symptoms that included psychotic behavior, her friend Dr. Kandy Sandhu, right, correctly suggested that Braker had anti-NMDA receptor encephalitis, a rare disease where her immune system attacks her brain. - Courtesy of Paul Braker

"There has been no improvement. There has to be something," said April's friend, Dr. Kandy Sandhu, who shared her thoughts with her peers here and in India before asking Paul to suggest doctors test April for anti-NMDA receptor encephalitis, the same disease that attacked the woman in the movie.

Doctors agreed and May 20 tests results confirmed that diagnosis. April was transferred to Northwestern Memorial Hospital in Chicago under the care of a neurological team headed by Dr. Stephen A. VanHaerents.

"Anti-NMDA receptor encephalitis is a relatively new condition in the medical field," says VanHaerents, explaining how the rare condition was first described by Dr. Josep Dalmau and colleagues at the University of Pennsylvania in 2007. "It is a challenging condition to diagnose as there can be significant variation not only in symptoms but also the timing in which those symptoms develop."

The autoimmune disease often begins with headaches and flu-like symptoms.

"This may be followed by very prominent psychiatric manifestations, including anxiety, agitation, bizarre behavior, hallucinations and disorganized thinking. They may also have seizures," VanHaerents says. "These symptoms can progress into decreased levels of consciousness, frequent strange movements of the face and body, and decreased language output. They can also have large fluctuations in blood pressure, temperature, heart rate and breathing, which may require the patient to stay in the intensive care unit for prolonged periods of time."

Stricken with anti-NMDA receptor encephalitis, a rare disease in which her immune system attacks her brain, April Braker of Schaumburg remains in a catatonic state at Northwestern Memorial Hospital in Chicago.
Stricken with anti-NMDA receptor encephalitis, a rare disease in which her immune system attacks her brain, April Braker of Schaumburg remains in a catatonic state at Northwestern Memorial Hospital in Chicago. - Courtesy of Paul Braker

While there are no standard guidelines for treating the disease, April has received intravenous steroids, intravenous immunoglobulins and medications used to fight cancers, and had plasma removed, treated and returned to her body. Doctors also removed one of her ovaries that had a large benign tumor. "Increased awareness and research are required to better understand anti-NMDA receptor encephalitis to develop better treatments," VanHaerents says.

Forced by financial necessity to move back into his parents' home in Hoffman Estates, Paul started a GoFundMe account to help pay for April's COBRA insurance and other expenses. He's slept next to her hospital bed most nights.

"She could wake up tomorrow and be fine," Paul says, noting that April most likely will need months of therapy to recover, and may have suffered permanent damage from the disease. In the meantime, he looks into the vacant eyes of his wife and sees hope.

"She's beautiful. She's my wife," Paul says. "She's there, dancing in the dark."

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