Teal-clad pals form ribbon of supportOctober 8, 2013
By CANDY NEAL
Herald Staff Writer
JASPER — Family, friends and neighbors gathered at Rebecca Thorpe’s home in Jasper on Monday to show their support for finding the cure to a disorder that Rebecca has endured for the last two years.
“You can’t sit around and cry about it. She won’t let you,” Rebecca’s friend Brittney Dunn said. “She told us that she wanted us here today to do this. So that’s what we’ll do.”
The group of about 30 adults and children donned teal shirts and stood together to form a looped ribbon for Trigeminal Neuralgia Awareness Day. Rebecca’s husband, Tom, stood on the roof of their house to take the photo, which will be uploaded onto various websites.
Trigeminal neuralgia is a chronic pain condition that affects the trigeminal nerve, which carries sensation from the face to the brain. For those that have the condition, any slight touch — a washcloth, a makeup brush, even soft wind — to the area of the face that is affected will register as pain.
“Any sensation that touches the right side of my face registers as excruciating pain,” Rebecca said. “It’s like being Tased. It will bring you to your knees.”
And the pain is starting to spread, she said. “I get pains that go to my feet, my fingers, my abdomen,” she said.
According to the National Institute of Health, trigeminal neuralgia affects approximately 12 of every 100,000 people per year and is more common in women and people older than 50. But it has been seen in people younger than 50, including children and teenagers, said Rebecca, who is 40.
Rebecca was 37 in April 2011 when she learned that she had the disorder. She also learned that there is no cure for it. She takes medicine for it, but it’s actually medicine for epilepsy.
“We have to piggyback off of epilepsy medicine. But we don’t have seizures,” she said. “But it’s all that we’ve got.”
And it doesn’t completely eliminate the pain.
“It stores it up and then dumps it on you all at once,” Rebecca said.
Attacks like that have lasted as little as a few seconds and as long as days or weeks. Rebecca had a three-month attack last year. “I felt like I was going to die,” she said.
Three weeks ago, she experienced a pain attack that had her immobilized. “For 10 minutes I couldn’t move,” she said. “I couldn’t alert my husband, I could reach the phone. I just couldn’t move.”
Rebecca is on the third kind of epilepsy medicine. Each medicine works for a period of time, but eventually the body builds up a defense against the medicine, rendering it useless. “I’ve gone through three medications in the last two years,” she said. “I’ve got three more to go.”
Once she’s been through all of those, the only other option is surgery. “And that might not work, either,” she said.
Rebecca and the people who joined her for the photo hope to get the attention of the World Health Organization, which could invest money into research about the disorder.
Supporters have been working together online to bring about awareness to the disorder. That is how Rebecca met Melissa Pike, an Evansville woman who also suffers from the disorder. Melissa came to Jasper to be a part of the ribbon, and to meet Rebecca face to face for the first time.
Melissa is on the highest dosage of the third medication that’s being tried. “The medicine works for so long and then your body builds up a tolerance. When that happens, the medicine no longer works,” she said. “So your doctor tries another medicine.”
They both have a support network of family and friends, though those supporters can’t fully understand what it’s like.
“I knew she had it, but it didn’t really hit me how bad it was until I saw a report on TV about it,” Rebecca’s friend Connie Butler said. “The emotions came flooding in.”
Connie donned a teal shirt that had “Fight Like a Girl” for cancer awareness on the front and “Team Rebecca” on the back. Connie lost her mother to liver cancer about a year ago.
“This is my way of showing Becky that I support her,” Connie said. “I hope she knows that.”
At the end of the evening while snacking and talking to her friends, Rebecca paused in midsentence and fluttered her eyes for a few seconds. She had a slight attack. It wasn’t severe, she said once it was over. But she knew that she would need to go inside her home soon.
“The cooler weather affects me,” she said. “Winters are the worse. I have to hibernate.”
Supporters sent the WHO a petition of 10,000 signatures requesting that the disorder be added to its health topics list. The organization uses the list as a guide for the areas in which it will invest research funding.
While the agency’s officials agreed that trigeminal neuralgia is a detrimental disorder, “they don’t feel like enough people are affected to put it on their list,” Rebecca said.
But the supporters aren’t giving up. “We will submit petition after petition, over and over,” Rebecca said.
Contact Candy Neal at firstname.lastname@example.org.
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