It is my honor to share the stories of others in our community. Please enjoy this guest post by Nesrin Shaheen, director and founding member of The Anti-NMDA Receptor Encephalitis Foundation, Inc.
In my 25-year career at the Department of Foreign Affairs and International Trade, Canada, I have had 3 postings abroad: New Delhi, Damascus and Paris. Each location an exciting and interesting journey, with unique charms, life-long memories, and friends I may not have had the opportunity to meet. Upon my return to headquarters in 2004, I was looking forward to establishing a place I could call a permanent home for myself and my family, before heading out again on perhaps one final posting.
That fourth and final posting did come – although sooner than expected and without the requisite pre-posting formalities. I did not even have a valid passport at that time! It was 2008, just past the New Year, when my path was unexpectedly altered forever. I suddenly found myself in a place that I no longer recognized. Unbeknownst to me at the time, my latest journey would be long and nearly all uphill – a journey through hell.
My regular commute had suddenly been replaced by a daily, fearful trek to the Children’s Hospital of Eastern Ontario (CHEO) where my, then 12-year-old, daughter was fighting for her life from a yet unidentified disease. It would be six long weeks of innumerable tests, scans and even a brain biopsy before a diagnosis was obtained from a laboratory at the University of Pennsylvania where a prominent neuro-oncologist, Dr. Josep Dalmau, had developed a diagnostic test (only a year earlier, in 2007) for identifying what is now known as anti-NMDA receptor encephalitis (NMDAR). This autoimmune form of encephalitis produces a certain antibody that attacks the brain, with catastrophic consequences or death for those stricken.
NMDAR encephalitis frequently begins quite innocuously, with a flu-like illness. Over the following days or weeks, the decline and transformation is so complete, akin to a rapidly progressing dementia. Psychiatric symptoms predominate, followed by a further decline, heralded by the appearance of neurological signs: seizures, memory loss, loss of coherent speech, loss of mobility, ocular deviations, catatonia, insomnia lasting for days, weeks or even months, and involuntary movements throughout the body, complicated by severe disruptions of breathing, heartbeat and blood-pressure. The most severely affected patients are often rendered comatose—either as a consequence of the disease or of sedating medications required to manage intractable seizures, movement disorders and autonomic fluctuations. Round-the-clock care is required during hospitalization and for many months into recovery.
There is a growing consensus amongst medical practitioners that many prior descriptions of “demonic possession” may have represented accounts of what would later be broadly called “autoimmune encephalitis.” The best understood medical surrogate for symptoms of demonic possession is the recently identified NMDAR encephalitis. To caregivers, looking on helplessly, it is a malady like no other, characterized by the rapid onset of symptoms so fierce and so encompassing, that the patient is often described “as if possessed.”
The course of my daughter’s initial illness was classic, beginning with a bout of a flu-like illness, followed by memory loss, psychotic episodes, loss of coherent speech, disinhibited behaviours, and long-term involuntary movements of her arms and legs and insomnia.
After four-and-a-half months at CHEO and what seemed to be a significant recovery, the monster again reared its ugly head, just two months later. In the ensuing five years, she had four relapses in between long periods of rehabilitation and recovery following each relapse. Now 21, my daughter has made a good recovery despite horrible odds. If ever there was certainty in life or normalcy as I had known it, these luxuries are now gone. There are good and bad days and the old saying of “one day at a time” is, on the worst of days, reduced to one moment at a time.
The number of those afflicted with NMDAR encephalitis has increased into the thousands worldwide since the identification of the illness in 2007. By 2011 there were 22 positively diagnosed cases in Canada and since then, the number has increased by three- to four-fold. Many who were previously undiagnosed or misdiagnosed are now being properly assessed and treated, however an unknown number of patients suffering from NMDAR encephalitis remain unidentified and, therefore, untreated in psychiatric institutions or nursing homes. NMDAR encephalitis is not as rare as previously thought and there is great urgency to raise awareness, particularly amongst medical practitioners.
While my postings to Delhi, Damascus and Paris have enriched me beyond measure, this particular posting, has been the most challenging; it has transformed me and pushed me to do things I never would have imagined I could do.
An important milestone in this journey was the creation of The Anti-NMDA Receptor Encephalitis Foundation, Inc. in Canada in 2012. As the first organization of its kind worldwide dedicated solely to NMDAR encephalitis, it provides support, advocacy and research funding benefitting patients and caregivers. It was recognized as a tax-deductible charitable foundation by the Canada Revenue Agency (CRA) in 2013.
Although a cure may currently elude the medical community, thanks to recent scientific advances, a disease once characterized as “demonic possession” has a name and a roadmap for treatment. In addition, through the creation of the Foundation and the many support groups that have arisen on social media, a sense of community has formed so that no one should have to face this voyage alone.
Those wishing to learn more about this disease are invited to visitwww.antinmdafoundation.org.