A Brooklyn fitness instructor needs the public’s help in finding a cure for the excruciating facial disease she lives with every day.
Amanda Young, a 39-year-old social worker and exercise pro from Kensington, has Trigeminal Neuralgia, an extremely rare disorder that causes constant pain across her face.
It’s caused by a problem with the trigeminal nerve, which controls facial sensations and movements like biting and chewing. Sometimes it’s the result of a blood vessel pushing against the nerve; other times it’s a symptom of an underlying condition, like MS. But doctors were stumped when they met Young, who is, no pun intended, young for TN: The average patient is older than 50.
TN is so painful that it’s been dubbed “the suicide disease.” Since only 15,000 people have it — a quarter of the number of people diagnosed with Parkinson’s each year — research and funding to cure it is scant.
“Parkinson’s, MS, and all these neurological (conditions) have a lot more funding and we have none,” Young told the Daily News. “TN is so rare that really nobody knows about it.”
But she’s hoping to change that. Young has teamed up with fitness streaming service AcaciaTV to share her story and encourage donations, which could lead to a cure. Users can sign up at US.Acacia.TV with the code SUPPORTAMANDA to contribute. Young is also holding a fitness fundraiser in October, in time for National Trigeminal Awareness Day on Oct. 7.
Despite the pain she lives with every day — Young describes it as the worst migraine or toothache you could imagine — few people even know she suffers from TN. She’s going public to raise money and “inspire other people who are struggling,” she said.
Her story began eight years ago, when she was teaching a gym class and felt a shock in her face. Healthy in all other ways, Young blamed it on a faulty hands-free microphone. But when the shocks continued, she went straight to the ER, but didn’t get any answers.
As weeks progressed the shocks got worse. She found they were triggered by the slightest of motions — the way the wind blew, how her hair fell on her face, or sometimes, even nothing at all.
The pain got so bad she quit her job in social work.
“I didn’t feel like I was giving 100% because I wasn’t really able to focus,” she said.
She finally found a neurologist who understood the disease and started medication to alleviate some symptoms. But she’s constantly forced to switch up her treatment once her body gets accustomed to it.
“You end up on this medication merry-go-round,” she said.
She’s now finding relief through acupuncture, which she does three times a week.
The pain is debilitating and progressive, but Young is finding a bigger purpose as a result.
“I’m now realizing I was meant for something more, and maybe that’s what this disease is teaching me,” she said. “You always dream of what your life is gonna be like, but once I let go of how I thought my life should have been and embraced the life in front of me, the expectations I have of myself have changed and happiness is a lot easier to find.”