Courage to face the other side

Anti-nmdar auto immune encephalitis antibody mediated disorder experience challenges life-threatening symptoms awareness receptor
Deborah in hospital after the latest relapse, when she was feeling much better
Anti-nmdar auto immune encephalitis antibody mediated disorder experience challenges life-threatening symptoms awareness receptor
Deborah with her sister and her mom

Anti-NMDAR Auto Immune Encephalitis is a rare condition that affects the immune system.  We hear firsthand about the courage to overcome this condition

By Deborah Yap

Like most 22-year-old female undergraduates in their final year of studies, I was preparing hard for my exams. Little did I realise, I would be facing life-threatening challenges.

Something Brewing

On Nov 28, 2011, the unexpected occurred. I suffered my first bout of fits, in school.

The medical tests turned out negative. I recovered and I was back to myself within a day.

On Dec 30, 2011, I had multiple fits at home and, while warded at Tan Tock Seng Hospital, I developed a high fever and I remained at a low level of consciousness.

Over the next week, my condition stabilised but I was still not myself.

Anti-nmdar auto immune encephalitis antibody mediated disorder experience challenges life-threatening symptoms awareness receptor
Deborah’s best friend, Janna, who always visited whenever she could

Unusual symptoms

I gradually deteriorated into short ‘frozen’ periods of time lasting a minute or two, and drooling at times. These were silent seizures and my arms would tremble and feel very warm as if I was running a very high fever.

The frequency of the silent seizures gradually increased and so did the duration of each seizure. My motor control was also impaired, and I would choke while eating solid food or drinking. As I could not feed myself, I depended heavily on family members and nurses.

The ‘other side’

A week later, I developed a series of continuous silent seizures over a couple of hours which then broke out into a series of fits lasting one to two minutes each.

I began to hallucinate. I walked out of my ward, talking to invisible friends, and I experienced personality changes – behaving childlike.

The nurses strapped me to the chair as I was restless, refusing to sleep and disturbing other patients. I could not speak in complete sentences and, at times, could not make myself understood. Words with five syllables or more were a challenge. Speech therapy was of great help.

My loved ones felt like strangers. This had to be the lowest point of my life as I came face to face with ‘the other side of me’.

What It Actually Is

On Jan 20, 2012, doctors confirmed my condition as “Anti-NMDA Receptor (NMDAR) Auto Immune Encephalitis”. It is a neurological condition that was first diagnosed only recently, in 2007.

Anti-NMDAR Auto Immune Encephalitis is an antibody-mediated disorder that causes psychiatric features, confusion, memory loss and seizures, followed by a movement disorder, loss of consciousness and autonomic fluctuations.

Some patients initially have hallucinations whereby they display bizarre and often disturbing behaviours, and sometimes they are mistaken for having a mental illness. Subsequently, they may be misdiagnosed as having a mental disorder.

Anti-nmdar auto immune encephalitis antibody mediated disorder experience challenges life-threatening symptoms awareness receptor
Deborah in hospital after the latest relapse, when she was feeling much better

Positive Response to Treatment

The patient can respond well, albeit often slowly, to various immunotherapies and / or the removal of an underlying ovarian tumour that often comes with the condition.

Fortunately, I did not have any tumour. After a treatment of steroids and other seizure- management drugs, I completely recovered and was discharged on Feb 8, 2012. To this day, I have very little recollection of that month.

Following my doctors’ advice, I rested for two months at home. I resumed my studies but with medication and a reduced academic load.

Relapse and Control

Unexpectedly, I had a relapse on Feb 26, this year, while preparing for my exams. This time, the changes and hallucinations were less extreme.

I believe early diagnosis, case history and medication helped. Nonetheless, the severity of the seizures and their increasing frequency alarmed the doctors and I was transferred to the High Dependency Ward.

Likewise, my medication had to be increased. My cognitive function was temporarily impaired and I had trouble making simple decisions. I was told that my consciousness levels were so low that I fell asleep while eating.

For fear of more seizures, I had to be confined to the bed, and fed and bathed by the nursing staff. I finally recovered and was discharged on Mar 25.

Anti-nmdar auto immune encephalitis antibody mediated disorder experience challenges life-threatening symptoms awareness receptor
After discharge, after the major ‘attack’, Deborah went on her first long trip with friends

Hope for the Future

Today, I am on a one-year immune-suppression treatment recommended by doctors and I have postponed my academic studies. I look forward to pursuing my passion – a career in baking and pastry.

My prayers are with medical researchers and doctors to find an answer to this dreadful auto immune disorder, of which 80 per cent of sufferers are younger women. I thank God that I was spared the extreme symptoms and condition of the disorder.

For greater awareness and Help

As this condition is extremely rare, it is important to help to spread awareness so that more will know about it. This may also reduce the chance of misdiagnosis.

Former journalist Susannah Cahalan, a previous victim, has published a book and set up a website dedicated to providing more information about Anti-NMDAR Auto Immune Encephalitis. Go to www.susannahcahalan.com for more.

If you experience any of the symptoms, please consult a doctor immediately.

Visit Deborah’s blog at oceansizedlovee.wordpress.com for more on her personal experience.

Republished from Issue 41.