On May 6th 2016, Amherst College student, Derya Demirtas, disappeared from her NJ home days before she could receive intravenous immunoglobulin (IVIG) treatment prescribed for autoimmune encephalitis (AE). AE is a life-threatening condition that causes inflammation of the brain and can lead to psychosis. According to the website of well-reputed organization, AE Alliance, autoimmune encephalitis can cause a “wide range of neuro-psychiatric symptoms,” including cognitive impairment, agitation, and loss of inhibition, hallucinations, and paranoid thoughts. Lack of treatment for this condition can lead to long-term damage and in some cases, coma, or death.
On May 7th, Derya experienced serious neuro-psychiatric symptoms which lead to an ER admission at Bellevue Hospital. On the 10th, she was moved from the neurology unit to the psychiatric wing of the hospital where she remains on involuntary hold. Her parents, James and Samime Baldini, report that the hospital treated their daughter with medications used for psychiatric illness despite their pleas to administer the treatment previously prescribed. Derya had responded favorably to steroids, a first-line AE treatment, in the 18 months before her confinement and was schedule to receive IVIG to further her progress.
Derya was seen by psychiatrist Dr. Jenny Blanchard who referred her to immunologist, Dr. Denis Bouboulis in 2014. Dr. Bouboulis treated her with antibiotics and later with steroids, the latter proving to be medically and diagnostically helpful. She went on to see Dr. Rosario Triffeletti of NJ, who confirmed her diagnosis through numerous diagnostic tests. Her family was later able to secure a much sought-after appointment with Dr. Souhel Najjar, prominently mentioned in the New York Times bestseller, “Brain on Fire: My Month of Madness”. IVIG, a common second-line treatment for AE, was ordered by Dr. Najjar in an attempt to further her progress.
Derya’s parents have personally attempted to work with Bellevue to resolve their treatment concerns and on multiple occasions provided prior records and research supporting Derya’s diagnosis. Multiple requests to facilitate transfer to another hospital have been met with refusals, according to the family. Their attempts to work with the patient advocate service at Bellevue Hospital, as well as filing complaints directly with the hospital, have failed to result in a transfer. As a result, the Baldini’s have held constant vigil at the hospital during their tireless efforts. The family has filed complaint with the U.S. State Department on behalf of Derya.
The first substantial breakthrough in this story came on June 21st when the Court ordered that Derya could not be forcibly medicated with psychotropic medications in light of her AE diagnosis. The ongoing legal action is being handled in conjunction with the family’s attorney, Giulia Miller.
As of today, Bellevue has failed to provide all critical medical records necessary to effectuate an immediate hospital transfer to a treating facility.
The Change.org petition, “Free Derya,” has received over 2,400 signatures to-date toward its goal of 2,500. The final petition will be delivered to decision makers at Bellevue Hospital. The family has also setup a Facebook page, “FreeDerya.” Supporters are using the hashtag #FreeDerya across social media.
Further inquiries will be handled by family representative, James Baldini, who can be reached at (862) 266-7392 or via email at authorjamesbaldini@gmail.com. Alternatively, inquires may also be directed to Kimberly Thomas-Tague via the Hashimoto’s Encephalopathy SREAT Alliance at k.thomas.tague@hesaonline.org.
Distributed by PREngine
Media Contact
Company Name: FreeDerya
Contact Person: James Baldini
Email: authorjamesbaldini@gmail.com
Phone: (862) 266-7392
City: Bellevue
State: WA
Country: United States
Website: http://www.change.org/p/ramrajumd-free-derya
