A rare autoimmune disease called anti-NMDA receptor encephalitis sent Amanda to the edge of death. Penn neurologists pulled her back.
Cary McCaria tells a story that is every parent's worst nightmare.
"Almost overnight, my beautiful, 28-year old daughter Amanda plunged into darkness - from being a vibrant, active young adult to someone who heard voices and was hallucinating," says Cary.
It started in March of 2014 with Amanda's migraine headaches. Amanda says, "I'd had them before, but these were more frequent with pain radiating down my neck. I wrote them off to the stress of a new job, graduate study and a roller coaster relationship. When the headaches became relentless, I moved back in with my parents."
"When Amanda arrived, she was agitated and didn't sleep for five days," says Cary. "She heard people talking to her through a TV that wasn't on. Her appearance was disheveled. Our family doctor prescribed anti-anxiety medication which had zero effect."
Strung out on drugs or psychotic?
Cary and her husband took Amanda to the emergency department of a local hospital – staff thought she was doing LSD or bath salts. Cary told them 'no way, you don't know my daughter.' The emergency department physician ultimately diagnosed Amanda as schizophrenic or bipolar, and committed her to a psychiatric hospital.
At the psych hospital, Amanda's situation spiraled downward. She no longer recognized her parents. Her respiration and blood pressure plummeted to life-threatening levels, and she was rushed to the intensive care unit (ICU) of a nearby hospital where she fell into a coma.
In the ICU, a lumbar puncture, which examined fluid from Amanda's spinal column, was performed. The results were mind-boggling: Amanda's constellation of symptoms actually had a name – it was an autoimmune disorder called anti-NMDA receptor encephalitis, a rare disease often misdiagnosed. Certainly, neither Cary nor her husband had ever heard of it.
Penn Neurosciences discovered anti-NMDA receptor encephalitis
Cary Googled the strange-sounding disease and discovered her first ray of hope: Penn researchers, including Penn neurologists Josep Dalmau, MD, and Eric Lancaster, MD, discovered this rare disease in 2007. Equally important, they created a cure for it. Cary immediately arranged to have Amanda transferred to Penn Neurosciences.
When the body attacks the brain
Anti-NMDA receptor encephalitis occurs when the antibodies in a person's immune system attack the NMDA receptors in the brain which control judgment, perception of reality, human interaction, memory, and terrifyingly – breathing and swallowing.
Dr. Lancaster describes Amanda's case: "Amanda was a healthy young woman who, when she arrived at Penn, was comatose and unresponsive. We started infusion treatments of two chemotherapy drugs – Cytoxan and Rituximab. People with this disease often take months to come out of a comatose state. In Amanda's case, she responded very rapidly and woke up within three days."
Just a few weeks after arriving at Penn, Amanda sat in a chair and gave her mother a huge hug. She remembered nothing of her ordeal. In May, two months after the nightmare began, Amanda went home to restart her life.
Cary says, "From the beginning, every Penn doctor, nurse and technician we met said 'we know how to deal with the disease. . .we will get your daughter back to you.' And they did."
Amanda is deeply grateful. "It's been over a year now and Dr. Lancaster and Dr. Dalmau say to me 'just live your life,'" she says.
Thanks to Penn Neurosciences she can.