Island resident helps bring awareness of rare disease by lighting up Niagara Falls in teal

Switching the colour of Niagara Falls! With the flick of a switch Mindemoya resident Laurie Simon changed the colour of Niagara Falls to teal as part of International Neuralgia Awareness Day, October 7.

MINDEMOYA – A Mindemoya resident who has trigeminal neuralgia (TN), a very rare disease, said this year’s International Neuralgia Awareness Day was very special for many reasons.

“October 7 marked our seventh annual International Neuralgia Awareness Day and the day the world was lit up in the colour teal,” stated Laurie Simon. “People around the world wore teal-coloured ribbons and over 200 monuments and bridges worldwide were lit up in teal for awareness.”

By having the opportunity to, by the push of a button on that date, change the colour of Niagara Falls to teal was a special moment for Ms. Simon. “When I pushed the button to light up Niagara Falls in the colour teal it made this invisible disease, visible. When you have a rare disease that causes such extreme pain that has no cure it is important that we both celebrate our daily victories as well as continue to push for awareness. Awareness plus research equals a cure. A cure is our main goal.”

“It was an emotional moment,” Ms. Simon told the Recorder. “When you realize that after many years of trying to bring awareness of TN and there are so many people that support your effort to bring awareness; we have done a lot, but there is still a lot more to do. I wish I could explain it, it stirred up so many years of struggling to get that far. It was nice to see.”

“To flick a switch and have people on both sides of the falls watching, including many who have TN—we became one group. It did mean a lot,” said Ms. Simon. She pointed out that among the structures lit up in teal were the CN Tower and the Peace Bridge. It lets those of us with TN, and have to deal with this disease and pain every day, know that we are definitely not alone.” 

Trigeminal neuralgia is considered to be one of the most painful conditions you can experience. It is a debilitating disorder that results in episodes of intense, stabbing, electric-shock like pain, usually on one side of the face. The pain is often triggered by simple things like touching the face lightly, brushing your teeth or applying make up. It is widely accepted that typical TN is caused by compression of the nerve when a blood vessel (either an artery or a vein) lies on the nerve and presses into it. Other causes of TN include multiple sclerosis, nerve damage from trauma and tumours, or demyelination of the nerve (wearing away of the protect covering of the nerve). 

It is a chronic pain condition that affects the trigeminal or fifth cranial nerve, one of the most widely distributed nerves in the head. The nerve has three branches that conduct sensations from the upper, middle and lower portions of the face, as well as the oral cavity, from the brain. 

The attack usually happens in short, unpredictable attacks that can last from a few seconds to about two minutes, a week or months, or even remain constant (which is the case for Ms. Simon). Attacks can stop as suddenly as they start. She pointed out TN occurs most often in people over age 50, although it can occur at any age, including infancy.

“Kids three- and four-years-old have it,” said Ms. Simon. “I was in a high chair when I had my first TN attack. That was my first memory of it. At that time it went away, but came back later and didn’t cease.”

 It took many years for Ms. Simon to be properly diagnosed for TN. “The first doctor who said that maybe I had TN, said there was no cure and that I had to go home and live with it. At the time I wasn’t sure how to do that. This was the hand I was dealt and I had to deal with it, but I knew I was in for the long journey.”  

While research continues doctors don’t know what causes TN, continued Ms. Simon. “They have theories. This is a rare disease, not a lot of people have it and it can take years to be diagnosed by trying different medications and having MRIs to rule it out. I have never had luck with medications and some treatments add to the pain, while others have changed the intensity.”

About five out of every 100,000 people, or 1,500 people, are diagnosed with TN each year in Canada. “The reason I want to tell my story is that because when you have a rare condition, it can make you feel alone in the fight. Telling your story will help someone else,” said Ms. Simon. “This is the way I deal with it, I do whatever I can to bring awareness of TN. Hopefully more awareness and more research will eventually bring a cure for it in the future.”

Ms. Simon said, “one thing that we’ve done is, with the help of a couple of other people we started a campaign to get the World Health Organization to add TN to its health topic list, which in turn will help expand awareness of the disease and we can get some sources of funders to do research on this disease. This (WHO designation) will happen, but not until 2022, and it will be put on the list as chronic pain.” She is also part of a fundraising effort through TN Face Pain Research Foundation in the US.

“I am so thankful for my supportive family members, and all the friends I have made in this journey-this is one thing TN will not take from me,” said Ms. Simon. She is a contact person for people suffering from TN and can be contacted on email at laurie.k.simon@gmail.com

“I will do whatever I can to bring awareness of TN, and hopefully some day a cure will be found for it,” added Ms. Simon.