The registered charity Fighting TN, founded by Skye Davis and Peta Cameron in 2018, is trying to build awareness in the wider community and the medical field about the condition.
“When we founded the charity it was to find a cure and answers,” Skye said.
The trigeminal nerve that TN affects is responsible for feeling sensation throughout a person’s face, however when the nerve has been compressed by a blood vessel, damaged due to an injury, or in some cases a brain tumour, it distorts the messages sent to the brain.
People living with TN experience excruciating pain brought on by everyday triggers, such as a light breeze, brushing your teeth or talking.
They are often confined to their homes and beds, forced to miss out on milestones and family events, and unable to work due to the sheer level of pain.
“On my 34th birthday, I said I can’t take the pain any more, and went to the emergency department,” Skye said.
“I’d been to the doctor and had a whole lot of different procedures done, to the point where they didn’t know what to do and they asked me ‘Skye, what do you want us to do?’”
When Skye was diagnosed, she struggled with her new diagnosis with ‘suicide disease.’
“It’s known as the worst pain known to mankind, and if you look it up (‘suicide disease’ is) the first thing you see,” she said.
“It’s really confronting, I was in shock.
“We are still losing people to this disease, they are taking their own lives to get away from the pain.”
“We’ve achieved our main goal which was to establish a grant within the Brain Foundation specifically for TN research.
“We’re working hard to get the message out there, but we need more support.”
In recent years, celebrities such as Travis Barker from rock band Blink-182 and comedian Denise Drysdale have said that they were battling trigeminal neuralgia, however, it can be a hard condition to put a spotlight on.
“You don’t want to be seen when you’re in a flare up,” Skye said.
“You can’t eat, you can’t talk, you can’t communicate and you don’t want anyone to see you — those who do have it, don’t want to be in the spotlight.
Fighting TN will be hosting its 2022 fundraising event on October 8 at Echuca Aquatic Reserve.
“We’re hoping to showcase small businesses through stallholders and raffle donations, and local talent and bands with live entertainment,” Emily Davis, the event coordinator, said.
“We’ve partnered with Echuca Central Kindergarten and Country Kids Tongala are going to do an art gallery, but we’d like more stall holders and more live entertainment.”
Emily said the event was a great opportunity for up-and-coming and established performers alike to perform in front of an audience.
“We want to give back to the community that helped us establish the organisation in the first place,” she said.
The event will run from 10am until 4pm and aims to showcase local businesses and talents whilst raising awareness and funds for research into trigeminal neuralgia, and will include market stalls, children’s entertainment, live entertainment, food vendors and raffles.
For event enquiries, contact Emily Davis at fightingtn@mail.com or for more information, please visit www.fightingtn.com.au
If you need support, call Lifeline on 131 114.
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