Feb 5, 2013 11:59 PM by Tony Spehar -

Local woman shares her story of surviving rare disease

Imagine one day waking up to find you're having horrific hallucinations, you don't recognize your family, you have seizures and then you forget how to speak, read and write. Then, doctors say they can't find anything wrong with you. That was the reality for a Colorado Springs woman.

Erin Heberlein, 27, first began showing strange symptoms and behavior in Nov. 2011.

"I had a massive migraine and I just kind of slept it off," she described. "From there on I started having various changes."

Initially Heberlein thought the headaches and other symptoms were caused by stress from her job at Penrose Hospital. However, her family soon began to notice increasingly strange behavior.

"She would look at me and not know who I was, she would call me different names," explained Kim Heberlein, Erin's mother.

Erin Heberlein was vaguely aware that she was acting strangely, but didn't believe anything serious was going on even as her behavior turned more and more erratic.

"Just doing oddball things like purchasing very expensive things thinking it'd be covered by my insurance," she explained. "I thought I won $10,000 from the lotto."

Her parents, worried about Heberlein's odd behavior, encouraged her to visit their home in Denver often so they could watch her. It was there that she had her first seizure in front of her family just before Christmas in 2011.

"She bit, I mean, like a portion of her tongue off the side and was very out of it," Kim Heberlein described.

After the seizure Erin only remembers a few bits and pieces of the next three-months of her life.

"I remember, slightly, riding in the back of an ambulance to the hospital," she explained.

Doctors performed a battery of tests on Erin to try and determine what was wrong with her, tests that showed nothing according to the doctors. She was discharged and returned home, but more seizures and strange behavior followed. Then she began losing her ability to speak, read and write.

At that point doctors believed Erin was suffering from a mental disorder, possibly schizophrenia. She was put in isolation in a mental ward for a time. Her mother Kim, a social worker and therapist with experience in mental disorders, believed the problem was physical and contacted numerous doctors across the country trying to find an expert who might know what was wrong with Erin.
Eventually Kim Heberlein was put in contact with a doctor at University Hospital in Denver, when she described Erin's symptoms the doctor told her to rush her to the hospital immediately.

"Told me there's something wrong, you've got to get a team around her," Kim Heberlein said.

The doctors at University Hospital struggled to find answers and after asking her mother about previous test results they ran some of the tests again. Eventually they determined Erin had Anti-NMDA receptor encephalitis, a condition so rare that it was no surprise her previous doctors had failed to diagnose it. Only doctors who are aware of the existence of the disease and know exactly what to look for can spot it on test results. The condition created an inflammation in Erin's brain and caused her immune system to attack connections in her brain.

"People can think you're downright crazy when it's really just this microscopic inflammation of your brain," Erin explained.

Treatment, which includes chemotherapy, started immediately and Erin began to get better. However, she had to learn to speak, read and write again.

"Things didn't just come back all at once," she described.

At age 26, with the help of her mother, she learned the basics of life again. Now, remarkably, she says she's almost completely back to normal. She's back at work as a physical therapist at Penrose Hospital. She still undergoes regular treatment and a relapse is always a possibility. But, she says she has a new lease on life and thanks the determination of her parents in pushing for a diagnosis with saving her life.

"They're the reason I'm here," Erin said, holding back tears.

Erin shared her story because she wanted more people to know about the disease in case they, or loved ones, exhibit the same symptoms she did. She and her family worry that she only overcame her conditions because of her parent's efforts and her ample insurance policy. They fear there are many who have been falsely diagnosed, like Erin, with mental conditions who can be easily treated.

A book has been written about the condition called "Brain on Fire," Erin Heberlein says she cannot yet bring herself to read it. But, she hopes it can also spread information about Anti-NMDA receptor encephalitis.

For more information about "Brain on Fire" go to:



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