By Lethbridge Herald on October 7, 2020.
Some local residents are hoping to one day hold a winning hand against a so-far incurable disease.
Recognizing International Trigeminal Neuralgia Awareness Day, slated for Wednesday, Jackie Anderson-Lea, her daughter Mackenzie Lea and some car poolers got an early start in the ongoing quest to build awareness for the neurological disease.
And not even the COVID-19 pandemic was going to stop them as this year’s initiative got behind the wheel via a poker rally which started at the Elks Picnic Compound at Indian Battle Park Sunday afternoon.
Members of Team Kenzie — named after Mackenzie, who has the disease — drove to various stops around the city, educating themselves on Trigeminal Neuralgia and going for the jackpot in the process during Paint The Town Teal Trigeminal Neuralgia Awareness Day, teal being the international awareness colour.
“We really had to get creative and think outside the box,” said Anderson-Lea. “So we had a poker run. There are five stops throughout the city and each stop has a Trigeminal Neuralgia awareness sign and a trivia question. So you have to learn something about Trigeminal Neuralgia before you get your poker card. So it is a little bit of a trade-off. You hand in your cards and we have encouraged people to socially distance and enjoy the river bottom on this beautiful day while we count the cards and then we have prizes for best poker hand, best decorated groups and the kid that brings in the most.”
Having watched her daughter battle Trigeminal Neuralgia for seven years, Anderson-Lea took action last year with the first local awareness initiative.
“Trigeminal neuralgia is a very rare disorder,” said Anderson-Lea. “It typically impacts a senior population, but my daughter was diagnosed at the age of 15, so that makes it even more rare. Our trigeminal nerve is the fifth cranial nerve that comes out of our brain stem and it basically controls the functioning of our face.”
Anderson-Lea said there are two types of Trigeminal Neuralgia, typical and atypical.
Typical Trigeminal Neuralgia is sharp, shooting, electrical pain, while atypical is more of a long-term, throbbing type of pain.
“It’s known as the worst pain in medical history and current medicine,” said Anderson-Lea. “So it is a nasty disease. There is also no cure and it is progressive. There are medications that can provide some relief, but those provide side effects that are almost as bad. There are a number of different surgical options that can provide temporary relief, but there’s not a cure.”
The nickname for Trigeminal Neuralgia is the Suicide Disease, said Anderson-Lea.
“Because so many patients that have it, there is no hope and there is no cure and the pain is so intense that’s the only option that they see. So raising awareness is so important and as a family and as a community we have really come together. We call ourselves Team Kenzie and we are the group that has wrapped ourselves around her and have really taken the responsibility to raise awareness. She’s young and we have hope that we are going to find a cure.”
Mackenzie has had two neurosurgeries, said Anderson-Lea.
“But she is certainly not at any level of remission or cured. She is on full disability and was very driven. She wanted to go to medical school and had a whole bunch of goals. She was a dancer and a straight-A student and her life came to a screeching halt.”
On Wednesday, the actual Trigeminal Neuralgia Awareness Day, Team Kenzie will have a lantern walk that kicks off at 7 p.m. at the Civic Centre Track and will end at city hall, which will be lit up with the colour teal.
The inaugural local Trigeminal Neuralgia Awareness Day last year drew 250 people with a barbeque and gathering at Nicholas Sheran Park. Anderson-Lea said she plans to change up the event every year going forward.
Though Trigeminal Neuralgia research is ongoing, Anderson-Lea it’s hard to say if a cure will be found.
“So we want to raise that awareness and get it out there,” she said. “Trigeminal Neuralgia runs hand-in-hand with multiple sclerosis and some other neuro-type disorders. As research grows there we are hoping we can piggyback on that. My daughter is only 22, so we have hope that there is time. It is tough, but we are doing what we can.”
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