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Free Derya who has been involuntarily commitment for the wrong disease. (#freederya)

The woman in this college clip at the end of the reading was diagnosed two years ago with a rare neurological condition known as autoimmune encephalitis. This disease creates antibodies that attack and destroy healthy brain cells.  Psychosis, memory loss, hallucinations, movement disorder and problems talking are a few of the presenting symptoms.  Usually oral steroids can resolve symptoms within days and had twice before with Derya.

She was scheduled to have IVIG treatment on May 9th.  On May 7th her disease had flared and she was taken to Bellevue Hospital’s ER and admitted to neurology for treatment of her Autoimmune Encephalitis.  Bellevue Hospital was given information about Derya’s medical history.  The hospital was contacted by Derya’s Neuro-immunologist to discuss treatment; the psychiatric staff decided to treat with medications they had been told were known to make her Autoimmune Encephalitis worse.  She was presenting with psychosis; autoimmune encephalitis is known to mimic Bipolar disorder.

Ignoring her medical history and past responses to neuroleptic medications. She was given these medications and Derya worsened within a few hours.  On May 10th, the psychiatrist transferred Derya from Neurology to a psych ward where she was put on an involuntary hold and given the diagnosis Bipolar disorder.

Derya wrote a letter to the treating Psychiatrist asking that she be treated for the disease she was admitted for (Autoimmune Encephalitis). The only way to reduce symptoms for this horrible disease is to follow the medical protocols to treat Autoimmune Encephalitis.   

On May 24th   Susannah Cahalan, Author of New York Times bestseller, Brain on Fire: My Month of Madness, joined Derya and our family as a show of support and to bear witness at a scheduled court hearing.  The outcome of the hearing was that Derya’s involuntary hold would be extended and the court determined that her Psychiatrists at Bellevue Hospital, New York, were permitted to give Derya neuroleptic medications by force.  These were the very list of medications that the hospital had been notified would worsen her Autoimmune Encephalitis and had in the past.  There was no record of her Autoimmune Encephalitis history and diagnoses presented to the court.  The hospital never treated her for the disease she was admitted for nor have they performed any medical evaluations for it. 

Further, evaluations and comparative tests and scans need to be made to determine the extent, if any, of the brain injury that may have occurred from lack of treatment and the treatment she has been given.  As of this writing it has been five weeks that my daughter has been at Bellevue Hospital.  Derya has deteriorated and is displaying the exact symptoms the treating psychiatrist was warned about:  catatonia, rigidity, autonomic instability, altered level of consciousness and depressed level of consciousness emerging later (i.e. coma).  Her condition waxes and wanes.   As her disease goes untreated she may sustain brain injury or damage that might not be reversible.   It is fear that in time she may be transferred to the state mental hospital because the treating psychiatrist has not been able to stabilize Derya by treating her for bipolar disorder.  As long as the involuntary hold and the court order stands to force strong dopamine antagonist medications, Derya will decline.  The hospital from the CEO, to all treating staff have been informed; left untreated and forced to take medications that worsen her condition, should Derya slip into coma, the next phase would be death.  

Derya’s Civil Rights have been violated.  She has a right to be treated for her diagnosed Autoimmune Encephalitis.

Recently, Dr. Ramanathan (Ram) Raju, President and CEO of New York City Health and Hospitals Corporation was lauded for his efforts to make healthcare a right.  “The problem is that health care in this country is a rental car. Nobody takes a rental car for a car wash,” Raju said. “So, there is no accountability on anybody’s part.” (Michael Gareth Johnson, June 7, 2016)

Bellevue Hospital is only one piece of the NYC Health and Hospitals Corporation.  We are sure that if Dr. Raju knew of Derya’s case and the damage being done to her that he would work everything he could to get her the equitable treatment that she is due. As president of the NYC Health and Hospitals Corporation we are sure that he would be just as upset as any parent would be to see their daughter suffer through this negative experience.

Here's a video of Derya: Speaking at the NJ Assembly Chamber in Trenton, NJ


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