GREENVILLE —Katie Perry Loubier has taken the lead to spread awareness in the community about Trigeminal Neuralgia (TN), a painful medical disorder which affects one in 15,000 people.
Loubier herself suffers from the disorder of the fifth cranial nerve that supplies sensation to the face and is characterized by recurrent electric shock-like pain in one or more branches of the nerve, each supplying a different portion of the face.
Loubier was diagnosed with the disease in 2012 after several years of unexplained symptoms including severe vertigo, migraine headaches, and feeling extreme pressure in her head. Her husband, Todd, started researching on the Internet and found a neurologist from Richmond, Indiana, who finally gave Katie her TN diagnosis and began her treatment, which included brain surgery.
During surgery, it was learned that she had a nerve and artery touching. The protective sheath over the nerve had worn away and only 10 percent was left. After months of healing, Katie is left with some side effects like extreme sensitivity to fluorescent lighting and loud noises.
“This disease has taken away so much of my life, but I am grateful everyday that I do have at least part of my life back,” said Katie. “I have limitations now and have to work around them. I never know when I will have a good or bad day which can be hard on relationships with friends and family. I don’t let that control my life though. My health has improved some, but will never be back to what it was before Trigeminal Neuralgia.”
Greenville Mayor Steve Willman signed a proclamation recently recognizing the 4th Annual International Trigeminal Neuralgia Awareness Day on Friday, October 7. The proclamation encourages all residents and businesses in the community to “Light Up Teal in supporting the fighters, admiring the survivors and honoring the taken so as to never give up hope in finding a cure.”
According to the proclamation, the TN disease has been known for centuries and causes probably one of the worst kinds of pain known. It was once labeled the “suicide disease” because of the significant number of people taking their own lives before effective treatments were discovered.
TN causes severe facial pain that can last from a second to 15 minutes or longer. Some people may experience up to 100 lightning-like bursts of stabbing pain per day. The disease can occur at any age, but onset after 40 is in 90 percent of cases, with a female-to-male ratio of 2 to 1.
An estimated 45,000 people in the U.S. and 1 million people worldwide suffer from the disease, although the number of people suffering may be higher than known because of frequent misdiagnoses.