Trigeminal Neuralgia walk raises awareness for disease

By Dale Woodard on October 6, 2021.

Roughly 75 people hit the trails Sunday afternoon to learn more about a rare and mostly-unknown disease.
Meanwhile, another person with the same condition has reached out online and connected with people around the world dealing with the same illness.
The third annual Paint The Town Teal Trigeminal Neuralgia Awareness event took place Sunday afternoon on the trails at the Elks Compound at Indian Battle Park, an event taking place in partnership with the Getting On My Nerves 5km Walk out of Portland, Oregon. 
“So we’re trying to partner with our international TN Warriors,” said Jackie Lea, coordinator of team Kenzie, named after her daughter, MacKenzie Lea, who has dealt with Trigeminal Neuralgia for the past eight years.
Trigeminal Neuralgia is a condition characterized by pain coming from the trigeminal nerve, which starts near the top of the ear and splits in three, toward the eye, cheek and jaw.
In dealing with the condition, MacKenzie has formed an online community, allowing others with Trigeminal Neuralgia to share their stories.
“I asked them 12 different questions from how long they’ve been experiencing this and what their diagnostic process was like and how it has affected their daily life and mental health,” said MacKenzie, 23. “I got all of those statements and I put them together in a video, just telling the stories of all these different people because it really is a unique thing that affects everyone differently.”
Trigeminal Neuralgia is an isolating and lonely disease, said MacKenzie. 
“I live most of my life inside because going outside is a trigger. Being in this wind is a trigger. I cope mostly with having an amazing family and I’ve created this online community to be on Instagram and Facebook of people living with this disease. So I get to talk to people every day who are dealing with this and it makes me feel a little more seen and understood. With it being so rare it’s hard to find people in a smaller community like Lethbridge. This primarily affects older people, so being able to reach out online and find people my age has been an amazing experience and it has really validated my experience.”
Sunday’s walk at the Elks Compound consisted of three different walking paths signifying the three branches of the trigeminal nerve, the ophthalmic branch, maxillary branch and mandibular branch, said Lea.
Each walking path had carnival-like activities at each station and an awareness component, said Lea.
“They’ll get a questionnaire card they’ll get as they go on their walk. They go to the station, they do a fun, carnival-like activity, they fill out their awareness card and they go to their other stations. If they do the full walk it does add up to 5km. So they’ll be in conjunction with the Getting On My Nerves walk. They’re all fun activities and lots of fun engagement for all ages (with) learning at each one.”
When each participant completed the walking path, they redeemed their card for a hand of poker cards. There were also opportunities to earn extra cards throughout their walk.
“If you get a hole-in-one at the bean bag toss you get a poker chip to redeem for an extra card to help your odds with our hand,” said Lea. “There are prizes for the best poker hand and prizes for the kid that brings it, kind of a spirit award, and there are prizes for the best team or family that comes all decked out in teal. Our goal today is about awareness. It’s to teach about TN and get the word out there because it is a very rare condition.”
The activities won’t stop with Sunday’s event.
Thursday is Trigeminal Neuralgia Awareness Day with a lantern walk scheduled at 7 p.m. at the Crossings Pond in the northwest corner.
“They’re going to light it up teal and Lethbridge City Hall will be lit up as well,” said Lea, adding events like Sunday’s is crucial in getting word out about Trigeminal Neuralgia.
“There’s no cure and it’s known as the worst pain to mankind. It’s nicknamed the Suicide Disease because many individuals who have the condition, there’s no hope. That’s terrifying for us and that’s not OK. We need a cure. We need better treatment options.
“The treatment options themselves are either very invasive neurosurgeries or medications where the side effects are so extraordinary that the quality-of-life piece attached to that is brutal. So awareness is so important.”
That means hope for better treatment options and for a cure, said MacKenzie.
“When I see this, I think I can possibly have a better future because we’re raising awareness for this and maybe I will have a better treatment option that will allow me to have a family and get married and go back to school and have a job.
“I know currently there is no medication specifically designed to treat this. We use medications for other diseases. I know they are making a medication at the moment to specifically treat TN. So that is a huge step forward.”
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