February 28th is Rare Disease Day, so I thought I’d take this opportunity to talk about my rare disease – Trigeminal Neuralgia. It is estimated that there are more than 300M people worldwide living with a rare disease. 4.3 in 100,000 of those people have TN.
Trigeminal Neuralgia is characterized by excruciating pain, typically on one side of the face. The pain can be triggered by the slightest amount of stimuli, such as eating, talking, smiling, kissing, brushing your teeth, or even a breeze.
Trigeminal Neuralgia, such as in my case, is usually caused by a pesky blood vessel rubbing on and irritating the Trigeminal nerve. However, TN can also be caused by Multiple Sclerosis, a tumour, a cyst, an arteriovenous malformation, or facial injury/trauma.
The majority of TN cases present in people over 50 and the disease is more common in women. According to the IJCP, only 1.5% of cases present in childhood. I was 15 when this all started and being that I didn’t fit the typical description, it was hard to get diagnosed.
There are medications and treatment options available, but they’re not guaranteed to work, they often come with side effects, and they are not permanent. Over the last 7 1/2 years, I’ve tried over 20 medications, had countless procedures, and have even had 2 brain surgeries.
I’m grateful for the relief I have experienced here and there, but like most rare diseases, we need better treatment options and we need a damn cure. So on this day, I thank you for listening, learning, and advocating for those of us with rare diseases!
For more information and for my sources, you can visit:
https://www.mayoclinic.org/diseases-conditions/trigeminal-neuralgia/symptoms-causes/syc-20353344
https://theijcp.org/index.php/ijcp/article/view/113/90
https://seattleneurosciences.com/conditions/trigeminal-neuralgia-treatment/
Living With Teal 