On 9th June 2011, four days after my twenty-fifth birthday, the helpful Justin Yong came to pick me up from home early in the morning. We headed to Hotel Armada in the other side of town.
I was to give a 30-minute lecture at the 1st National Rare Disorders and Medical Genetics Conference. Justin and I arrived one hour before my talk started.
We were met by the lady who made balloons for children, Susanna, at the registration counter as Justin and I queued up like everyone else.
Moments passed. The conference treasurer, Chew Anna, spotted us and led us to a corner where I was given a faculty kit and nametag. Justin and I then waited until there was a short break during the change of speakers to enter the room.
The conference room was packed. We found ourselves seated in the middle of a crowded row. The conference chairperson, Professor Dr. Thong Meow Keong gave a talk on rare disorders and genomics. Then Professor Shuhua Xu from the Chinese Academy of Sciences in Germany gave a lecture on population genomics in gene discovery for complex diseases and traits.
Along the way, I looked at Justin who appeared to be listening and asked if he wanted to stay back for the rest of the day. He shook his head and said he needed to return to work. Besides, he couldn’t understand what they were talking.
Professor Dr. Thong then took the podium and spoke about me. When he finished, I took his position after placing my bottle of water on the stage beside.
I can normally see the audience from the back a podium, but this one had a laptop on it which blocked the audience from seeing my face, so I adjusted the microphone to stand away from the podium and joked how I was too short. The audience must have cracked up in chuckles, or so I hoped.
Since I knew MRDS like family, I began my talk with the assumption that the audience already heard my story. You can read the abstract I prepared below.
I told the audience what Malaysia needs, what Malaysian patients need in our doctors. We need their willingness to admit their mistakes, their courage to admit they lack experience in the patient’s condition, their respect for the multidisciplinary approach to medicine and not pretend they know everything, their humility not to act formidable which intimidate patients and cause us to become ignorant, their confidence in themselves so that they are not afraid to refer patients out when necessary, and their willingness to learn.
I told the audience that Malaysia is falling behind in the treatment of Neurofibromatosis not because we lack money. Not because we lack doctors. But our doctors are unwilling to learn.
I prepared for this talk at the very last minute. Although I was invited three months prior and submitted my abstract in May, my studies and other speaking engagements left me to only prepare the lecture outline and powerpoint 12 hours before I was scheduled to speak. While I was planning, I also debated with myself whether to speak in this manner. In the end, I decided to go ahead, thinking that the audience this time will comprise of mostly patients, their families and the general public like the other MRDS-organized events I attended previously. I reasoned that the general public is more likely to identify with my sentiments.
So that’s how I spoke. I spoke from my heart for the public. I was calm and at-home with the audience even though I wasn’t sure who they were. The heart of my lecture was dissatisfaction. Yet, by God’s grace, I was in control of my emotions. My speech was measured and my points hit home.
Even as I ended my speech and returned to my seat, I expected doctors in the room to not take my message too kindly. But Prof. Dr. Thong stood up and gave me a friendly, cheerful pat on the arm as he walked towards the podium. The lady two seats to my left told me that I should speak at more medical conferences, not just this one.
At the ladies’ washroom, a faculty member from Australia chatted with me. She did not comment about my lecture, but from her body language, I sensed that she related with me.
Two weeks after the conference, I received an e-mail from Chew Anna who told me that 25% of the audience gave feedback. Many of the them said that my lecture was most interesting. Chew Anna spoke to a Paediatrician who said that more doctors should have been there to hear me.
Chew Anna had been amused. During break time after my session, she had cheerfully come to me and said that I was so brave to ‘scold’ doctors in their presence! I gave everyone a pleasant surprise that day.
I later learned that MAJORITY of the audience were, in fact, doctors from all over the world!
Sometimes, ignorance may be a good thing. Had I known that this was a ‘doctors event’, I might have chickened out and became patronizing. But that won’t be Yvonne Foong, would it? 😉
This blogpost is long over-due. I could only bring myself to write about it ten days after the speech. Even I was shocked by my own performance. Unlike my usual self, I felt not even the slightest of nervousness. I felt a degree of calmness and confidence that I never knew was possible.
My health started to decline when I was thirteen. In a matter of three years, I lost the hearing in my right ear and could barely walk by the time I was finally taken to the hospital at sixteen. I was diagnosed with a rare genetic disorder. I did not understand why my parents ignored my pleas for medical attention and resented them. The reason, I would later understand as I matured into adulthood.
Immediately after the diagnosis, I was scheduled to undergo a surgery to remove multiple Meningiomas from my upper thoracic spine. It left me bed-ridden for three weeks before a physiotherapist helped me learn to sit, stand and walk again. Eight months later, I was subjected to another surgery to remove an Acoustic Neuroma that had caused my right ear to be deaf. These two surgeries left the right side of my face semi-paralyzed and the nerves controlling my right leg damaged. My stay at the hospital exposed me to a reality in our healthcare that I would otherwise not see.
The desire to make sense of my situation led me in search for answers on the internet, where I was acquianted with other patients abroad. Through my interactions with them, I met a Neurotologist in the U.S. who offered to remove the residuals of the Acoustic Neuroma which could only be partially removed at the Kuala Lumpur General Hospital in the previous year.
My trip to the U.S. for surgery was an eye-opener. I learned that it was not necessary to lose hope in the face of a complicated medical condition. It was not necessary to become incapacitated after two or three brain surgeries. Most importantly, I realized that well-experienced neurosurgeons need not make patients feel intimidated and hang their heads low. Well-experienced neurosurgeons are ever willing to keep their patients informed about their own health and medical condition. Patients abroad are treated with respect and accorded dignity.
Since my return from the first surgery abroad, I started a campaign to raise awareness about Neurofibromatosis and funds to remain under the care of my U.S. surgeons. I also wrote my story into a book in hopes of reaching out to other patients suffering in silence.
Throughout my fundnraising campaign in the past six years, I came in touch with other Neurofibromatosis patients in Malaysia as well as patients with other rare genetic disorders. I heard their stories and the challenges they face. During my talk at the National Gemetics Conference, I will talk about a few of these issues that I believe needs to be acknowledged and addressed by the nation.