Kharina’s Story, 21 years-old, Florida, USA

On November 19th, 2017, Kharina, 20 year-old and 3rd year pre-med student, started with intenseheadaches which were not going away with over-the-counter medicines. We rushed her to the ER that night, and after running some tests on her, the doctor said she was fine and sent her back home to get some rest. After 2 days, November 21st, the headache came back, but this time more intense and I rushed her back to the ER and, by the time we got there, she had started blinking her eyes. We were told that her eyes blinking was indicative of seizure activity and the doctor kept her for observation while putting her on anti-seizure medicines. The next day, the neurologist moved her to the ICU and induced her in a coma, even though Kharina was herself, besides the headache and a few hallucinations. He claimed that there was seizure activity in her brain, and he had to put her on heavy doses of anti-seizure medicines and a variety of antibiotics.

After 10 days, on December 2nd, the doctors extubated her because all her bacterial and viral infection tests were negative. By that time, her health had become worse. She had stopped talking, swallowing, had developed pneumonia and became catatonic. The doctors at Halifax Hospital couldn’t diagnose her and kept telling me to take it one day at a time, while I watched my daughter’s life slipping away. Finally, after going undiagnosed for 2 weeks, we got her transferred to the Orlando Florida Hospital under the care of Dr. Hyeong Lee and his team.

On December 7th, the day she arrived at Florida Hospital, after seeing her for less than 10 minutes, Dr.Lee told us that she had anti -NMDAreceptor encephalitis. He immediately started her on heavy doses of steroids, without waiting for any results for the tests that he had ordered. After a couple of days and since she wasn’t recovering, he added 3 days of IvIg treatments.

A week after being admitted, Dr.Lee confirmed to us that Kharina has acute anti NMDAreceptor encephalits, and the time she spent at the previous hospital, without being diagnosed, had already compromised her health. Since she wasn’t responding to the steroids and the IvIg treatments for almost 2 weeks, Dr. Lee and his team decided to by-pass plasma exchange and gave her a 10-hour intravenous treatment of Rituximab. Then, on December 21st, Kharina started getting weekly doses of Rituximab through the spine, which is called intrathecal treatment. She started recovering after the 2nd intrathecal Rituximab, just before the New Year, and got discharged on Jan 19th, 2018. She had 4 intrathecal treatments of Rituximab and spent almost 2 months in hospitals.

It’s been 6 months and Kharina has been recovering well. I strongly believe it’s because of the aggressive treatments she received under the care of Dr. Hyeong Lee and his early diagnosis. Kharina has also been able to complete her final exams from the last semester and run a 5k for Brain Cancer this past April. She is looking forward to going back to the University this fall to complete her last year of pre-med. I’m always going to be grateful to Dr. H. Lee and his team for saving my daughter’s life. I also thank God everyday for the miracles in our lives and everyone’s continued prayers for her recovery.

During Kharina’s ordeal with this disease, which was completely unknown to me before, I have researched and read a lot about anti-NMDA receptorencephalitis. It saddens me that so many lives are being ruined and pain inflicted on families because of misdiagnoses or going for years without being diagnosed. Because of this, I have decided to turn my experience, through my daughter’s ordeal, into something positive by bringing more public awareness about anti-NMDA receptor encephalitis and help fund Dr. Gregg Day’s research at the Washington University of Medicine, with the hope that more lives can be saved.