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Trigeminal Neuralgia (TN)

“My name is Mackenzie and I have Trigeminal Neuralgia. Trigeminal Neuralgia is a degenerative disease that affects the Trigeminal nerve. TN is characterized by extreme nerve pain, typically occurring on one side of the face. Most often, it’s caused by a blood vessel rubbing on the nerve and damaging its myelin sheath. However, it can also be caused by tumour(s), MS, Shingles, or facial trauma. I started experiencing the pain when I was 15 years old. I remember the first day vividly; the feeling of an icepick piercing through my temple and into my eye. I grabbed my face and fell to my knees. Living with TN means that I don’t know if I’ll be able to talk, eat, touch my face, brush my teeth, kiss my boyfriend, or go outside on any given day; doing these things result in excruciating, stabbing, electric, pain in my face. It is unpredictable and leaves me frozen in fear awaiting the next attack. TN awareness is so important because, at the moment, we don’t have a cure. Medications and surgeries can help and sometimes provide temporary relief, but they always come with their own side effects and risks. After my first surgery, I had a CSF leak and required two epidural blood patches. Then, most recently, I developed Serotonin Syndrome; 28 pills a day and still requiring an anticonvulsant infusion every week caught up to me and very well could’ve killed me. As I await my second brain surgery, all I can do is hope that I get a couple years to experience a normal adult life before it comes back. The reality of living with this disease is harsh and knowing that it’s only going to get worse over time is mentally exhausting; there’s a reason why it’s nicknamed “the suicide disease”. There’s been so many days where I’ve wanted to give up, but in those moments, I told myself to fight for the people that are no longer able to. The people that lost their lives to this disease deserved better and if that’s not a reason to raise awareness, I don’t know what is! I want to sincerely thank AWARE for helping in that effort; this necklace will be a reminder to keep up the fight and keep raising awareness!” @macdaddytheladyface

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