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Rare Disease Day Focus on Trigeminal Neuralgia

By: Earnst Ilang-Ilang 
This month, a special day occurs at the very end of February – no, I am not talking about the “Leap Year”, but rather: Rare Disease Day. This important day is meant to raise awareness for individuals and patients living with rare diseases, which account for 1 in 20 individuals living on Earth. Working at the ENDependence Center of Northern Virginia, I have been blessed to meet so many people who continue to live their lives regardless of their challenges – it is truly a testament to their character, as well as their courage to see past their circumstances and hope for better days ahead.
Rare Disease Day brings significant importance to my own life, as I live with a condition called Trigeminal Neuralgia – an extremely painful neurological condition that affects the nerve that controls your face: touch, sensation, and pain – all of those attributes are controlled by the Trigeminal Nerve. Trigeminal Neuralgia also has another name: “The Suicide Disease”, due to the fact that it is one of the most painful conditions according to neurologists and pain specialists alike. I still remember the day when it first started…
I recently enlisted in the United States Navy in 2006, graduating from Recruit Training Command and being transferred to Groton, Connecticut for submarine training. I distinctly recall the pain that I felt shortly after moving, the excruciating and stabbing pain on the left side of my face, left me paralyzed from training. It was the worst feeling I have ever felt – I couldn't eat, I couldn't move a muscle, and it felt as though my life had stopped. After weeks of being reprimanded multiple times by my superiors, they finally sent me to a local neurologist, who immediately diagnosed me with Trigeminal Neuralgia.
It took months of pain management, being loaded with Hydromorphone and Morphine Sulfate every day prior to the diagnosis left me mentally beaten and frustrated to say the least. In fact, none of those medications were effective against my nerve disorder. It was only when my neurologist prescribed me medicine specifically to halt electrical signals involved with my facial, did I feel some form of relief.
My struggle did not end there – unfortunately, while most people talk about the symptoms of their diseases, they rarely talk about the side-effects that occur with the medications prescribed. I felt foggy, unable to speak coherent sentences, and forced to take medication that caused significant weight gain. I was fortunate enough to be qualified for neurosurgery at the University of Pittsburgh, and I will never forget the feeling afterwards, when they told me to stop taking my medication. I was terrified of what the future would hold, as I didn't want to feel the immense pain come back.
A few days passed, and the pain was nowhere to be found. I read horror stories from previous recipients of Microvascular Decompression – the surgery I had underwent. Many of the individuals stated that they felt pain and the surgery was a failure. I consider myself lucky to be pain free to this day. The left side of my face becomes numb, every other day, but that is much more acceptable than the blinding pain I experienced throughout the years before. It is a reminder of my own fortune, and that I shouldn't take this life for granted, because one day, the pain may come back. It is a terrifying feeling, to say the least.
Rare Disease Day offers me a vessel to educate others regarding my own struggles, but also to be cognizant of others' struggles as well. It is extremely vital for us as a community to band together and communicate our needs as individuals with rare diseases. If you are lucky enough not to be afflicted with a rare disease, my wish for you is to continue learning about and being open to other's who have to live with pain or struggle with an disorder, not only to enrich your own life experiences, but also to recognize the fragility of life, and how important it is to lift each other during times of irreconcilable pain. We can all do better as people, to open our hearts to those who need them the most – and is the reason why we recognize Rare Disease Day in 2020.